Bryant's Blog

Clouds & Magic & Signs

2012-01-30T16:41:00.003-05:00

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Hi Bryant. My mind is going and going and going .... it's like a Thesauras gone wild. Plus, superhighways of words / thoughts / feelings.   All expected since your birthday is Wednesday. Tomorrow, however, is the day I stopped feeling you move and went to the ER.

I Blogged yesterday about grief and stuff but today I am thinking about clouds. I was out driving around the other day with Liam and he says "Do you ever look at the clouds and see things". And I am thinking "not anymore" ... but I looked up into the sky and there they were, clouds ... Liam went on to say what he thought they looked like and I couldn't help but wonder how many times you played that game in your mind. I also made a mental note to start looking at the clouds again :)

I have also decided on a new challenge which is to try and be more grateful for the Grace and Goodness and the Magic you bestowed upon us.   If I remain still enough, I can see so many things. It's just so hard to do. My mind is always going and I am working on slowing it down to try and realize the beauty in things as simple as clouds. Liam's question jolted me back into the life of a child, the time when things seem so new and so interesting.   That's how it was with you, every day, you made us really "see".

As your birthday gets closer, I am always reminded of the choas that ensued when you were delivered. Our entire lives changed in that instant and far more than we ever imagined was then put into play. I remember saying to Daddy "You know, he doesn't seem like a baby" ... trailing off to try and figure out what that meant ... I was a new mom and you were a baby but something was different (aside from the medical stuff obviously). So we looked at you in the NICU and both nodded, still not entirely sure what we were seeing.... I know now. You were a Spirit Guide. Your physical body was in rough shape, to the point that you were not supposed to live 24 hours and when you did that, we were told you would never have purposeful movement.

But you did. Everything you did was purposeful and somehow you had this unqiue way of leading and teaching. You were ever the clever one ~ usually quite amused by my off-the-wall personality. I distinctly recall your face in the hospital the time the doctor was messing with us. Daddy had stayed with you overnight and the Drama was only getting worse. The Attending apparently thought he walked on water, but I had a different opinion of him ... which caused the final showdown.   And your face. I remember I walked into your room and the doctor followed and your face said it all "Oh Foolish Man, You are in for some serious schooling ~ My Mother Is Here". And so it was. By the end of that day, Administration was involved and the Doctor who thought he walked on water was ordered to offer a full apology.

My own personal rip current AKA Grief

2012-01-29T21:07:00.000-05:00

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Yes. I am writing another entry about waves and the ocean. I found this little tidbit of information about rip currents, which is my present thought process right now ... my analogy for how things are going in the Grief Department.

Rip currents are terrifying because they catch you off guard: One minute you're bobbing along peacefully in the surf, the next you're being dragged out to sea at top speed. They occur in all sorts of weather and on a wide range of beaches. Unlike violent, crashing waves, you probably won't notice a rip current until you're right in the middle of it.

Well anyone who knows me and my situation with losing my son, Bryant, will immediately understand why that paragraph is so profound. I did a post awhile back on "The Waves of Grief" and how I almost got myself killed by a rip current in FL. I was reading on line that rip currents kill more people than hurricanes, tornadoes and lightening storms per year. Really? That is freaking staggering. Good thing I wasn't on a quiz show because my money woulda been on hurricanes or tornadoes.

But these rip currents are just like Grief. I mean in the beginning, you are so numb to it, you just are almost in a bubble type wrap mentally, at least I was for about the first year. As it got nearer to the 1st Year Anniversary of Bryant's death and even closer to his birthday, I was about to be schooled in rip currents as they relate to grief. The dullness of the mental trauma was wearing off and slowly the reality of the horror was beginning to settle in. Yet it caught me completely off guard. The next thing I knew, I was on my knees in a full blown panic attack. I have had a few since then, nothing to compare to that first one until the other day when I was driving. Now having a panic attack while driving is really not a good thing.   Part of me was taking my pulse to be sure it was still there and the other part was saying "perhaps taking a break might be in order here ..." while my head was on fire screaming this awful horrible (inaudible) scream. I guess you could say my SOUL was screaming. That's how it felt.

I have explained the feeling as that of my spirit fighting against my physical body and almost trying to escape. It's a horrid awful terrible feeling.

Now on to the rip currents. I am wading slower this time, because in a few days, we will be at February 1st which is Bryant's birthday. I had gone into labor / hospital on January 31st so for me, the whole event is drawn out longer which means more time being dragged about ....

Then, if that wasn't bad enough, he died in March. I have also written extensively on that and will again once March rolls around. Bryant died during the Spring Equinox which is interesting to me and I shall Blog about that in March but for now, I am on the look-out for the rip currents and more importantly what the "F" I can do about them.

I would not categorize my life now as "bobbing peacefully' but there are times when I do let the good happy memories take over and there I am, sort of peaceful, or as close as I ever think I will get to it.   When Bryant died, part of me died as well. It's kind of like birth, you give birth and new part grows in your heart. Well let me tell you, when your child dies, part of you dies with them. Sometimes it's a pretty big chunk of your heart and there are times when my entire heart feels dead.

Some people will say it's a choice and you can either choose to be miserable or choose to move on. That is such a load of crap it's almost funny if it wasn't such a lie.   It's like saying "Hey you won't get caught in a rip tide if you just wish upon a star" - you know, hello? I can't wish away the rip currents anymore than I can wish away the death of my son. So now what? Now I have to "deal with it".   Just like you would if you were caught in a rip current. The advice is this:

Rip currents are anomalous occurrences, but they are born out of ordinary, everyday ocean waves. On the most basic level, you can think of ocean waves as travelling fluctuations in water level. Some external force (usually the wind) pushes on the ocean, creating a swell of water, which is passed along the ocean's surface. The energy of the wave, which may be built up by additional wind pressure, is passed from water molecule to water molecule. The water itself doesn't actually travel; only the energy keeps going The resulting rip current sucks in water from the basin and spits it out on the other side of the sandbar.

So there I am, stuck in a rip current, stuck in grief or overpowered by it. There is no way to see it coming generally, and even if I do see it or know it, the strength of it only seems to increase. Here's what to do in an actual rip current:

To survive a rip current, or any crisis in the water, you have to keep calm, and you have to conserve your energy. If you don't think you can swim all the way back to the beach, get past the rip current and tread water. Call for help, signal to people on the beach and, if all else fails, wait for the waves to carry you in

Oh and the other helpful advice? Don't go into the water alone. This is definitely helpful to know in the Grief Arena and I have found that to be true. I have found some extremely supportive people who I can call or who can call me and just "know".   But the advice of keeping calm? Conserve your energy? How is that possible when you have other people telling you to "move on" and "get over it" or looking around like "are we still talking about this? I mean hasn't he been dead like 3 years". Yeah that's kind of not helpful. Sometimes I think these type of people are actually the rip current on top of the Grief rip current.

A lot of us in this awful circle have found ways to move along with Grief and to really grasp that this is not something you will ever fully recover from, at least for me, not until I see Bryant again.   When Bryant died, as he lay in the funeral home, I leaned over and whispered in his ear "My heart beats for both of us now". Actually, my heart always did beat for Bryant ~ and for my other kids .... that's just how it is when you are a mom to such incredible little people who grow up and become adults. Bryant did make it that far, but he had so much more time left that should have been his.

I think the lesson I have learned and the reason I compare this to a rip current is that you are never "out of the water". Ever. There are times when all is good and peaceful and beautiful, but there is always there lurking, the possibility of being pulled down and under.   I will tell you, that those times are dark, very dark times. I never knew such awful places existed within the human experience. And those are the times when you need that helping hand to get back up - or maybe not even a goal that lofty. Maybe just a helping hand so you can tread water for awhile. That's actually what if feels like a lot of the time and even that is exhausting.

Bryant loved the beach. He loved life. He loved me and he loved his father and he loved his sisters and his brother. We miss him so much and the passing of time does not dull that even a little bit. It's like being stuck in two time periods. Time stopped in 2009. Forever.   But it also went on and so I guess I live fluctuating or vacillating between the two.

I am thankful for the parts of my heart that remain alive. They have names - Emily, Julia and Liam.

And my heart does still beat for Bryant ~ just like I promised him. I love you Bryant and I miss you, xo xo ~ Mommy.

(Info about the rip currents is from www.howstuffworks.com)

Love & Grief

2012-01-17T17:52:00.000-05:00

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Grief. Yes, I know and hate it. The feeling is so intense, unlike anything I have ever felt before, except for one thing; Love. How can that be? How can Love and Grief be lumped into the same sentence, ever? I think we grieve in direct proportion to how we love. Not how much we love, but how.

I never really realized what the heart was capable of. As a younger person, before I was married, I did some incredibly asinine things, but I never really had anxiety. Much the opposite, in fact, I was mostly carefree and pretty wild, up for just about anything.

When I got married, I had my first actual panic attack. Most women are happy to be married. I was freaking scared out of my wits. I couldn't believe I had actually done it. Perhaps the control freak in my was starting to show up. Eventually, I settled down and was content in the whole marriage thing. Then I found out I was pregnant. I was pretty happy about it since we both wanted children; maybe not quite that fast, but it was okay. I felt I had done everything I needed to prior to being married. It didn't take long for the incredible dread to set in. I knew something was wrong with the pregnancy but I was 23 and who would think such a thing? Not the doctors, who told me I was "not going to enjoy my pregnancy" if I didn't stop 'imagining' things. Ha. The day Bryant was born, I think that pretty much shut the door on me ever doubting myself ever again and vowing to be in control, always.

It's also the day that I found out what love really was. Total, 100% unconditional love. I remember the 'bargaining' ... please God let me change places with him. Please. Please let this be a nightmare. Please let him live. And on and on it went. So, yes, Bryant did live, despite all the issues he had. But he had some very close scares and was medically fragile. From Day 1, I went on a roller coaster which I believe I will never be off. It was profound.

Having that type of love, that feeling, was scary. I knew the other side ... what would happen to me if something happened to him? It would be bad, I knew that. The longer he lived, the more we did, the healthier he got, the more I could 'relax'. But it was always there and when he was 10, he went into status (a prolonged seizure for over 2 hours). I've blogged about this before, but it was a pivotal moment because I realized I could really never, ever relax.

So Bryant lived 20 glorious years. You might say I was prepared for the probability that he would die. But even though I knew how bad it would be, I could never have prepared myself for the grief. The pain and the hurt. The absolute horror and terror.   It's in the human spirit as well as our animal friends for the 'flight or fight'. Well with Bryant's life, I was constantly stuck in the Cortisol bath of "fight'.   For everything. He was worth the fight and man, I fought. When he died, well, there is no fight or flight but the cortisol was still stuck on. I was literally paralyzed with grief. There is no respite or escape from grief. Even when you find yourself laughing or smiling at something, grief is there to stomp on it and drag you right back down. And sometimes, I confess, it's much easier to stay down.

There is nothing really to fight and certainly no flight involved with this foe. And sometimes, it's even safer to just be paralyzed. The intense feeling of grief is so awful and horrific that sometimes it's just easier to stay there. To venture out, to risk being hurt like that again, are almost, at times, incomprehensible. It's kind of like the old example of putting your hand in fire or on a hot stove ... your body tells you "hey that was a really stupid move, don't do it again". Well with grief, it's much the same.   No one wants to feel like that and every time you venture out of it, you risk getting 'burnt' again.

It's ironic to me that psychiatrists will label someone with grief as 'depressed'. I think we could all skip the 6 to 8 years and come up with that diagnosis sans medical school / training. Or to call it 'mental illness"? Try trauma. Try an actual trauma to the mind, body and soul.   Grief is miserable and no one wants to be around it, obviously. No one wants to hear about it or talk about it. So people deep in grief either shut up about it or compartmentalize it for where it's okay to talk about.   That's usually with someone who has gone through it and understands it. There are physical symptoms that go with it as well.

Everyone knows life doesn't go according to plan all the time. I get that. But I also get that sometimes feeling grief is better than feeling nothing at all. Because sometimes that's what it feels like. Without the grief, you wonder what emotions await you and you wonder if you will ever actually break free of it and if you do, you are definitely scarred by it, not wanting to ever feel that way again. But that's the thing. That's the flip side of love. And Bryant was all about love and living.   It's hard work and I am heading quickly towards the really bad times - January - March just plain suck. I had a massive anxiety attack the other day. So I know it's coming. My goal this year is to try and meet it head on. Last year was awful and I don't want to feel that type of pain ever again, but I know it's not something I am in control of. Grief has a way of waiting for you ... so you have to go THROUGH it to ever emerge out of it. That's my plan.

In the meantime, the question I suppose is this. Would I have done anything differently February 1st, 1989? No. I would have fought for Bryant to live and I would never ever want to imagine life without him. Love trumps grief Bryant. I love and Miss you xo xo Mommy

The Waves of Grief

2012-01-09T18:55:00.001-05:00

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Grief. Such a strange emotion. Definitely unlike anything I had ever felt before. I have felt enormous fear and incredible joy; but fear, it's an animal all onto itself. The thing about it, for me, is that I think we grieve in direct proportion to how we love. That's not 'how much' we love but 'how' we love. Some of us, are just wired that way, demonstrative and outgoing, wearing our collective hearts on our sleeves. Believe me when I tell you, I learned many coping mechanisms while Bryant was alive that got us through some pretty awful and dark times. But this? I just don't know.

I posted about "Baby Steps" which is absolutely true in my case. And also living in the moment. That's mostly what we did while Bryant was alive. But, as stated before, my greatest fear was always that Bryant might die. Thoughts pushed far from my mind though, although they would occasional intrude ... I managed quite well in keeping them compartmentalized. The thing is, with grief, sometimes you will catch yourself being 'happy' and that, in itself, can seem bad. I sometimes feel I have no right to be happy, nor any desire to be happy now that Bryant isn't here to share it.

Guilt that I am here and he's not. It's not supposed to go in this order. He is supposed to be here enjoying life. Living it. Sometimes this unjustness grips me so furiously that I literally cannot breathe. I feel the anxiety attack coming and it just is like a giant wave that comes crashing down ....

I can use that as a literal example because I almost drowned at the beach. There was a really bad riptide. My daughter warned me about it and told me not to go out far. Ha!!! I thought. I am from the northeast and have been to the beach all the time and what a silly girl. Well for some unknown reason, and I do know better, I turned my back on the ocean. I was going to try and ride the wave but was fooling around with my sunglasses when I was hit. I never saw it coming. I tried to get up but could not because another wave struck and the riptide just kept me, literally, on my knees. I remember looking up and seeing my daughter and saying "Help Me" almost not believing what was happening. She lent me a hand and I got up but I will tell you, I have never looked at the ocean the same way. I will never turn my back on it again. It's too powerful.

And so it is with Grief. It's there to wait and watch. There is no avoiding it and there is no sense in trying to ignore it. It will knock you out and drag you down. The only way, for me, is to meet it head-on. So I spent yesterday in bed. I don't have a lot of these days, but when they come, I feel it. I don't look at it as "giving in" but more as respecting what is happening. It's my way of dealing with the wave that is certainly going to come, certainly going to knock me down and certainly, if I do not keep an eye on it, drag me completely under.

My first encounter with "The Grief Wave" was about a year out. It was almost Bryant's birthday and I was standing in front of the stove cooking. Suddenly and with no warning, I was on my knees. My entire body was limp, just buckling under something unknown. At first I thought I might be having a heart attack and, believe it or not, was not that concerned about it. I was not able to breathe and was suddenly overcome with this incredible sense of sadness and misery. I managed to get up and went upstairs and just went to bed (luckily I had a little 'helper' in the form of a sedative ...) However, that was the first time I actually felt something that powerful. Even when Bryant died, I was basically numb to it. Almost like a blur, being in a cloud most of the time. But this experience, being knocked down by Grief, I was shocked at the intensity of it.

So I respect it. I will not let it rule my life, but I will never turn my back on it. It's insidious and patient all at the same time. The irony of it all is that those who have never felt it's enormous power, think you can somehow "control" the waves. Sure, you can watch for them, but in the case of Grief, it's not always visible when the wave is coming. And if you don't recognize it, well it's gonna hit you either way. When I was down, caught in the riptide, I then understood the gravity of the pull and felt it of course. And in Grief, just as with the riptide, I needed to ask for help. Pretending I was okay was great when I walked into the ocean, but by the time I was knee deep, I was in over my head without even seeing it happen. My daughter warned me, just as some warned me early on about how it wasn't really ever going to get better 100%, that time would not heal all wounds ~ those were the honest ones. Those are the people who can be a life-saver to have because they KNOW what they are talking about and they don't tell me to "get over it" or assume because I have a good day here or there that this is somehow not real.

So I wade through this ocean of life, in awe at the beauty and wonder of it but also aware of the powerful grip of Grief. It really isn't a subject you can bring up over lunch with anyone unless they are part of this club. We all grieve differently, that is for certain. We love differently too ~ but therein lies the spoiler. I loved Bryant so vehemently and I am so outraged that he is not here, that I can expect the lows and the highs ~ just as we did when he was alive. Some days it just seems like it's too much to bear. Some days it's hour by hour and then, there are other days when I'm okay and it seems, perhaps, Grief may have taken a respite from plaguing me. I definitely have my eyes out for it ~ it's not something to NEVER turn my back on.

Loving you every day Bryant xo xo Mommy

How far out? Far, really far.

2012-01-06T17:14:00.001-05:00

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Bryant and Emily @ Disney - Grand Floridan

Strange language results from residing in different worlds. We had to learn very quickly upon Bryant's birth and our introduction into the Special Needs world and the Medical Arena.   It was literally, a life or death situation. The fact that Bryant's very life depended on us did not ever leave my mind. We were, in fact, responsible for his every breath. I remember watching his chest rise and fall and being able to count it and know instantaneously if something was up. Even if the count was normal; I knew.

When you have someone who is totally dependent on you to live, it's a very complex emotional situation. Most of it gets buried deep within because if you stop and take the time to think about it, well that in itself can be devastating. I picture it like having death lurking around every corner. Certainly, at the very least, danger. Life-threatening stuff. If someone coughed or sneezed, well that could translate into a collapsed lung and perhaps a 10 day stint in the PICU on life support. A twitch? Could be a grand mal that would leap into status and cause him to seize for over 2 hours. That was brought on by chicken pox.

When Bryant was born, besides the obvious question - Is he going to live there also was, how is he going to live? Will he see his first birthday? Will he crawl? Walk? Talk? Eat?   What would happen when he was done with school? Where would he live? With whom would he live? How could we make our home more accessible for him and with what funds? Would his funding be cut off? And the worst question ever faced by parents was the conundrum we faced and probably many special needs families face - What if we die first?

The only thing worse than having someone depend on you for every living moment is not having them. The threat of Death was around all the time. We were trying to outrun it the best we could. Certainly Bryant was on his own mission to be sure his life had meaning and was successful. Some people may erroneously believe that now we can "go on with our lives" and it must somehow be a relief or easier. But it's not. Even with the nightmarish conditions of 10 day hospital stays, countless operations and the threat that each day may be his last; this is not easier.   This is a horror from which I ran and Bryant ran 20 valiant years. We all did, his siblings, his father, his extended family. We all raced. Fought the fine fight.

As I move through this awful journey without Bryant, I now have to face the new and profound set of challenges. Bryant isn't here physically anymore to take that away for another day or time. It's here now. People in the mourning process also have their own language and one question we ask each other is "how far out are you" meaning how long has it been since your child died. Just those words, are almost impossible to type because it makes it even more real. I answer with the time, as we all do, but the other day I realized, this isn't just from the time Bryant died, this is from the time he was born. The grieving process was put away on a shelf, occasionally looked at; but I was more afraid of confronting any of it because I just didn't want to ever believe that Bryant would die. I knew he could ... but we always seemed to out run it.

Even with the surgery, the sudden illnesses, watching horrific things happen (like IV's drilled into his shins) ~ well there was hope he would beat it, he would get better and we would go on. That's all I wanted. I never asked for more. I was content with Bryant's situation and we were a good team. And to have that ripped from me after all we went through drives my anger beyond sometimes what I think is humanly possible to bear.

So basically, I find myself still in a cross-road. I am trying to listen.   I had to learn how to compartmentalize the issues and feelings and even to block some memories entirely. I would love to believe all this makes me stronger. But, in fact, it just makes me harder, my defenses always up, Emotionally withdrawn and really not to interested in exploring my 'feelings' because maybe it's just too painful to confront what is there. I've kept it at bay for so long and I really do not know any other way. Clearly it's not working. It worked when Bryant was alive because he was our spark. ~ so actually, one could say, I was dependent on Bryant to live....................... not really the other way around ~~~~~~~~~~~~~~~ =]

Sadness has its place an I am sure it always will. Looking back at everything that was thrown at Bryant and us, I try and pull forth the reasons we kept going. Was I really that strong? Nah. It's because Bryant had this incredible way of making us "live in the moment". That was the key then and I think now as well. Every moment spent grieving is moments that are taken away from living. True, part of life involves the reality of sadness, grief and reflection. I think perhaps the connotation is that it is bad somehow, or not healthy to be sad, explore your grief and reflect on that. And for me, this is where the "Aha" moment comes into play. When Bryant was sick, he was sick. That was the moment. The OH MY GOD is he going to live through this ????? And when he did, the relief and the knowledge, that yes, death could be around, but if you stop living, then you are already dead. Sounds corny and silly ~ but it's truth. I think the point is that yes, life does sometimes have to stop for whatever reason, but it also has to resume. So taking the time to confront grief should be just that ~ and then the get back up and live for the moment. I am tired of watching and looking and waiting for grief. The gloves are off.

If we had not followed that creed while Bryant was alive, I would have been too scared to move. I would have shuttered him at home and barricaded the doors. That would not have stopped anything, except living. I would never have done that to Bryant so now I wonder why I would do that to myself or my children or my spouse?

Does this mean the pity parties are over? I've had some revelation? Well that would be nice but it's not reality. The reality is that my life was forever changed the day Bryant arrived. The wheels that were put in motion could never, ever, ever be reversed. So to me, I will forever have over-whelming, painful, God-Awful grief lurking about ~ It is what it is. But also, I know, I will confront and face it. And on to the next moment. Back to life with Bryant and the Magical Journey he set us on.
I miss you Mr. B ~ xo xo Mommy

Baby Steps

2012-01-03T21:07:00.001-05:00

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February 1989 ~ that's when you entered our World, or perhaps more accurately, we entered yours. From then on, life changed in an instant. Everything we knew, or thought we knew, was different. It was a new normal that we would have to navigate and adjust to. When you were born, you were whisked away to the Neo-Natal Intensive Care Unit. I was transferred with you, as I insisted that I go ~ even if that meant discharging myself against medical advice and driving the 1.5 hours to the hospital where they were taking you. Didn't matter to me that I was post-op, right off a c-section... nope. I wanted to be with you.

We were told that there would be no "heroics" (whatever that meant) and when I asked what that meant, the doctor (Dr. Bell) gave a long-winded answer that really didn't answer my question at all. But then again, I was learning a new language. I have to say, I did pick it up pretty quick. It was do or die, literally, in those days, and I knew your life was basically in our hands. We had the 'choice' to remove you from life support or reject the g-tube or whatever. Even though you were so small, 4lbs, 10oz; in the NICU you were a giant compared to the tiny preemies.

I didn't know any different, you were our first. So at 4 months, you were still alive and quite a bit of heroics had taken place, including you surviving several full codes (heart and breathing stopped); CPR done on you for over an hour; Congestive Heart Failure, a Trach, G-tube, and countless pneumonia's and other things like RSV. So when they called the meeting per our request, we wanted you home, it was immediately established that they were only sending you home to die; there was nothing left they could do for you and we had to state to them we understood the dire circumstances. It was almost funny if it wasn't so serious that anyone could possibly "under-estimate the severity" of the medical issues you had. You came home on a full vent (breathing machine) and you needed cardiac meds for the congestive heart failure You were born with a complex chromosome translocation and it affected you head to toe literally. Your brain had no known gyral pattern and you were missing the connection (corpus collosum) and you could not swallow, cough or eat (no gag reflex) which can be an issue when the stuff going down the esophagus ends up in your lungs .... hence the g-tube and trach. You had as ASD which is a heart problem and just everything else all the way down to your bi-lateral club feet. Several operations later, you were on your way ~

Baby steps.

Slowly, you improved at home, still attached to your CPAP machine that helped you breathe, baby steps. Up in your walker, we were determined to treat you just like a regular, typical baby. And we did. But you were always older and wiser, causing me to comment one time to your father that you just didn't seem like a baby ~ looking into your eyes it was almost as if you were older somehow and, in fact, you always did the leading .... you took us along on this journey.

Baby steps.

It took a lot of work and some days, it was two steps back, one step forward, sometimes no steps forward and sometimes, more often than not, leaps ahead. You definitely kept us hopping and your zest for moving and grooving through life was pretty clear.

It wasn't long before nearly 20 years seemed to fly by. It got harder for you to be up and you generally used the power wheelchair to get around but you still used your walker ~ always taking a step forward. Especially if it involved your father's motorcycle.

This was taken along one of our many road trips and adventures. Always smiling, you were 'up' for pretty much anything. It made life so much easier to have a spirit like yours. I have never seen such an incredible amazing spirit guide ~ the profound influence you had on us and others. Of course it worked both ways, so many people loved you and now so many people miss you because of all you gave.

I know that you were getting tired. It was harder to get around for you and again, we knew we would need to make adjustments. I always half-joked that you would go right from High School to retirement, not necessarily a bad thing; I had plans for us to do this and that ... and now those plans, Bryant are gone. But in the midst of my absolute angst and grief over the loss of my compass it has become clear to me that, again, it's going to be baby steps. I look at how far I have come. I know I will most certainly go backwards in my grief, but as in your life, I know that means a leap will be coming to propel us forward. I cannot overstate how obvious that has become and to me, that's a huge leap. I could not imagine ever going anywhere you hadn't had the opportunity to go. Yet somehow, you have found a way to keep 'pushing' me. Now, because of you, we will visit the Florida Keys. Initially I had thought "no way" because I know how much you loved the beach and how sad it would be that you weren't with us. Then it hit me, that's so untrue. The reason I even have the opportunity to go to the Keys and California (we are doing a mid-west trip as well) is BECAUSE of you!

One of the friends I know, because of you, has generously offered to let us use her house at the Keys. So you will be there. And, the California thing? That's a Compassionate Friends Convention. I had dismissed that early on, because you would never have gone there and how could we go without you? Ha. Then I realized, it's, again, BECAUSE of you that we have this opportunity to go.

Oh the Places We'll Go. The Dr. Seuss book. You know, in the beginning it seemed almost like a Dr. Seuss World where lived, the language of the medical world and special needs world - someone even wrote a poem to the Dr. Seuss "Green Eggs & Ham" regarding IEP's. And really, that's how it was and is. Your sister is planning the road trip, quite excited about the geography part of it. And Liam wants to see the "petrified forest" - and Emily just loves to travel - you both were my little adventurers back in the day and she continues that love of life Bryant. We all do. Sometimes it's just so hard to move forward. And I think of you, the visuals above, the photos of your tiny feet and the ones of you on life support, but you fought and you smiled and you loved and most importantly you lived. You did not just survive or exist, you lived. There's a profound difference and you clearly knew that.

Quite a comparison. This was done for the speech I gave at Children's Hospital in Boston, MA regarding how successful one could be with a tracheotomy. How someone could over come the unimaginable obstacles you had to ~ and to grow up into a man. Wow. I got to be your side-kick, we all did and it was one hell of a ride.

Another slide from the presentation shows us meeting (then) Red Sox player Mike Timlin, meeting with (then) Senator Sununu and just regular life at the Mall. All of these were because of you. Your charitable work for the Children's Hospital when we met the Red Sox at the fund raiser; the trip to Washington DC to meet with the Senator(s) and other Legislators regarding health care.   I would say you made the rounds and you made a difference and you made an impression.

So I guess that's what we miss so much. And then just being in such distress, such grief, it was a new World, this time without you and this time definitely void of any sunshine or light. However, the lesson is that you still are with us; that's impossible to take away and you have left me actually quite well-equipped with so many people who love and cherish your memory. You took care of me Bryant and apparently, you still do.

So it's forward I go, we go as a family, baby steps.   And some pretty big leaps.

Through the terrible horrible darkness of grief I have found that ray of hope. This new journey we are on, we did not choose nor did not want. But it is the journey we must take, nonetheless.    I thought it would be without you and that's why it's just so hard. Yet these events, these opportunities, I realize, are gifts from you.   You brought them forward and wrapped them up. We just have to open them. And you know what Bryant? That's my very plan. Or maybe yours :)

To Infinity and Beyond Bryant. Like Buzz Lightyear says! Oh and Dr. Seuss ~ Oh The Places We'll Go! All together, always. I love you beer nuts ~ jimmy legs xo xo Mommy :)

New Year's Eve

2011-12-31T18:57:00.001-05:00

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Trying on shades. You were not a huge fan of shopping ~

Watched videos today of you Bryant. Mostly of us at Disney, The Happiest Place on Earth. It's New Year's Eve, officially, and tomorrow brings 2012.

I was watching "Midnight in Paris" and this quote was said which I think really sums up my life with you:

"I believe that love that is true and real creates a respite from death; all cowardice comes from not loving or not loving enough, which, to me, is the same thing ~ And when you look death squarely in the face .. it is because you have loved with sufficient passion to push death out of your mind, until it returns, as it does to all men" (Midnight in Paris)

You had a rough start, that's for sure. You were not supposed to live, at all, not even 24 hours. But you did, for 20 years. The interesting thing about that is we had a choice. As posted in the previous blogpost, you did quite a few things that surely made me crazier than I would be ~ like almost dying so many times. Cardiac Arrest, Status Seizures, over 25 operations, countless pneumonia's, life support for 2.5 years .... bla, bla, bla. And you were so susceptible - like the time on New Year's Eve, 1998 - you surely would have died if it hadn't been New Years and we weren't up late. So I guess that's what sums up our lives. Horrific scary events followed by incredible bliss.

(In the hospital, in bed - joined by Emily - she was always by your side Bryant.)

But with that risk, your medical fragility and all that, we were never paralyzed with fear. We did everything we could think of, went everywhere, never placed any limits on what you could do or see. If we could adapt something, you would do it, including skiing, horseback riding and traveling the United States (and quite a bit more). Having been given the heads up that life was short and you might not have 80 years ~ it was clear that we had to hit the gate running. The other choice? Do nothing. Live in fear and angst about what could have been. Why couldn't you have been healthy? Why did you have to suffer at all? Why, why, why. And sometimes, in the beginning, I did allow those thoughts to intrude, but mostly we just did not have time for them.

Which brings me to now where I have a lot of time to think about why ... but I have chosen not to for the most part. I save my rambling rants for the Blog and for my Journal. It's unfair, no question. But to choose anything else, to love to the fullest, only means the pain will be as intense when the loss happens. I think, you grieve in proportion to HOW you love. That doesn't mean any one loves any less or you can judge who loves who by any demonstrative behaviors, it's within a person to know. But for me, and you, life was out loud, balls to the wall, pedal on the metal, good times .... so in missing you, it's the same, out loud, balls to the wall, pedal on the metal ... not so good times.

Through the Love and now through the Loss, I have learned some things. And as one year comes to a close, I wonder how much I will change and learn. I am trying to listen now Bryant, rather than being 'out loud" all the time. Emily still insists I have no filter, but I am working on it.

Your face is so brilliant, always radiant and always smiling. So forgiving and so ready for new things. I wonder what you think of all this. Someday I will know.

So in comes 2012. Love and Miss you Bryant,
xo xo Mommy

Almost New Years

2011-12-30T17:56:00.000-05:00

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So it's almost a New Year. We are doing our normal New Year stuff like renovations during the break. Daddy put in new lights and it's much nicer in the kitchen. Near the window is a tiny little bubble ... I like to think it's energy, happy energy :)

This picture is of you saying "hold me" - and I did, do you remember how we used to dance???? I love you so much.

Traditionally, New Year's Eve has always been a kind of bad time. You used to pull your worst antics on New Years' Eve. A couple samplings? The time you decided to drive your wheelchair down the stairs and almost died. The time you decided to get wrapped up in the TV cord and have the ginormous tv fall, almost killing you and of course, lest we all forget, the time you spiked a fever to 107, went into status epilepticus (for two hours) requiring the hospital ER to drill into your shins (intraosseous infusion). So as anyone could imagine, I always held my breath for you around this time of year. Oh and the time you fractured your femur. Yeah good times, not so much.

There you are on the road with Dad and Liam .... with the mountains and horses and just that gorgeous day =)

Last night I had an incredible dream. Not quite Epic because I can't remember it clearly, but clear enough. There were two parts 1)We were together and it was beautiful out, sunny and just perfect temperature. We were almost blissful, carefree and walking down a road which was post-card, picture perfect. At times we would run and laugh and other times, just walk and stop along to look at the landscape. It seemed, in the dream, that people would come and go, like your siblings, and they'd scamper off to something else, but would continue to 'come back' to our adventure. In the 2) second part of the dream, I could touch you, we were also at one point dancing. I had you out of the wheelchair and we were twirling and dancing and it was wondrous. Daddy asked me why I kept repeating the scene (almost as if I had control of it) and I said "Because I can touch him and feel him". In was very real in the dream, that part is definitely Epic, in my opinion, because I COULD feel you and kiss your head. I remember thinking "take advantage of this" as if some voice was telling me too. It was not a lucid dream in the true sense of that, but I do know 'something' was telling me to keep repeating it so I could really really spend that time with 'you'.

Then I woke up, which I will tell you, I hate doing when I am having that type of dream.

Kind of like this road .... not the best pic but you get the overall general picture ... horses in the background etc. That's Julia off to the left .... And of course, me and you!!!!!

With Julia, Emily and Daddy on our road..........

Like in this picture, holding you and just swinging you around, you loved to dance and loved to have fun :) And you sure knew how Bryant. Lessons that I try and keep with me and the wonders you shared with us.

So another year comes to a close. Still a few days away, but of course, I am thinking about 2012, another year without you physically here. Time seems to fly and stand still all at the same time. Time. Hmm..... I hope I have more dreams like last night. But then, of course, life with you has been like a dream. We all miss you tons Bryant. Emily misses you a lot. I hope she will dream of the great times you two shared. My two little peas in a pod.

Love you xo xo Mommy <3

Daddy & Me

2011-12-27T16:56:00.000-05:00

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Well there we are. Newlyweds. December 20, 1987.   We were the typical "meet cute" couple ~ we met, fell in love and were married all within a year. I guess you can say we were ready, both of us were 'older' in our 20's ~~ we discussed children and agreed we both wanted them. So, five months later, I discovered I was pregnant with you. We weren't planning on having a baby quite that soon; we were going to build a house first and do some other stuff but that was put on hold. I knew something was 'wrong' from the very beginning. Around Week 7/8 I started spotting. Then gushing. Rushed to the hospital and the doctor came in and said I was most likely miscarrying or would but it was late and he wold prefer to wait 'til morning to 'do anything' (meaning a D&C).   I had been into the office earlier that day and that had taken an ultrasound but back in the day, nothing really was said because I was so early.

The doctor informed us that this was common and not that big of a deal but I was completely stricken with sadness. This could NOT be happening. But home we went, ready to go to the office the next morning for the D&C. Well, during the night, the bleeding stopped and when we got to the office, the doctor got YOUR heartbeat by regular doppler (on my stomach) ~ he said to get a heartbeat that early by the Doppler meant the beat was strong. So what was up with the bleeding? He said most likely I had "passed a twin" and that was common too.

Yet I could not shake the "something isn't right" so I bugged them constantly, to which they finally replied "If you don't stop this worrying you will not enjoy the pregnancy!". Enjoy? I was a nervous wreck. Something told me that everything was not alright.   Then, 36 weeks in, I had been to the doctor, everything seemed okay except I was ENORMOUS. He guessed you were going to be 10 pounds probably. Now that should be a red flag for anyone but we were all big, Glenn (your uncle) topped the scales at 10.4 and we just had "big babies". I was ecstatic!!!! Not for long. I went home and the movement stopped. I tried all the tricks, laying on my side, eating ice cream, etc. Finally, I called and they said "Go to the ER" and the ER said it was probably a lazy baby, you were sleeping and I was, of course, over-reacting. Except they decided, just to be safe, they would put me on a monitor. And your heart rate stayed flat. 140, 141, 140, 139, 140......... not good. The doctor said this was not good and summoned the U/S tech (this is the old days remember, they had to call someone IN around midnight) ~ who confirmed the "not good" because not only were you NOT 10 pounds, I was loaded with massive fluid.   Surely you would die so they had to do an Emergency C-Section but they wanted to wait 'til morning. So I spent the night in anguish hoping you wouldn't die.

Right at 8:00 a.m. I was wheeled in and the c-section done. The doctors were frenzied with the situation, saying the baby is grossly deformed and this and that and don't worry you're young you can have more kids and this wasn't your fault and the baby is incompatible with life and so on. Long story short?   I went to see you and right then and there it was apparent that you were here to stay. I don't know how I knew that but I did. You were transferred to a neonatal hospital 2 hours away and I demanded to go but they said they couldn't do that so I said then I will check myself out and so they arranged an ambulance.

You spent four months in the NICU with almost every imaginable ailment. You received your g-tube on Valentine's Day 1989 and your trach March 7 ~ and every complication including narcotising entrocoloitis, congestive heart failure, multiple full arrests and a constant state of pneumonia plus life support. Then, with nothing left to do for you, they allowed you to come home "to die" because they said you would never have purposeful movement and you just wouldn't live.

But you did. And your life and love just made Daddy and Mine so much stronger. We were a very efficient team and you definitely were our focus. But in your father I saw the most incredible man, the most loving father and husband ever. And of course, the two of you loved to pull pranks on me or scare me half to death.

Daddy was always with you. Keeping you safe. Making sure you were okay at night at Disney World and making our own stander for you, Daddy was always thinking of ways to get what you needed, even if he had to make it / adapt it himself. He made sure you went everywhere and saw everything; and it's just incredible to have witnessed the kind of love that you both shared. And your sense of humor too. Remember all the games and practical jokes and tricks you and dad would play on me?????? Haha. Oh such good times.

So this past week we celebrated 24 years together. And of course, you were there, somehow, incorporated into the conversation with the waitress, you always will be such an amazing spirit.

Your father loved you sooooo much. And I know you loved him sooooooooo much tooooooo! It was always amazing to see you both together.

Yep, just you and your dad. I know he misses you so much Bryant and sometimes it's so hard for me because I can write how I feel and I have no problem telling people how I feel ~ and dad just isn't that way. He tries so hard to be there for me but you know, I am high maintenance ;) Sometimes, he'll tell me he had a dream about you and how you were together again, doing all your fun things and it just makes my heart soar. The good times Bryant so far outweigh the bad, which makes it a circle of sadness that sometimes is hard to escape. I try and jump out of it to stop it; stop the sadness and remember the happiness. That's what Daddy says he does; he says he focuses on the good times.

I could probably put 100 pics up here easily of the things you did. He made sure you were part of everything, always and if there was an obstacle, he was on it, making sure he found a way to make it happen. Even riding the Harley with him! And those times in the hospital when you were so sick and I heard "the voice". Man, the hospital called Security! Your dad might be a man of few words, but that voice, when it rumbles, get out of his way!!!!

I love him Bryant and I can see you in him, it's so obvious. How could I ever stay mad at him? He makes my life complete and someday Bryant, when we are all again together, the circle will be complete, but this time happiness. We all miss you and sometimes I am so wrapped up in my own grief that I just don't know how to help Daddy.

I love you both so much. And we both miss you Bryant. So we did have a Happy Anniversary ~ our love created you and for that, I am forever grateful :) xo xo Mommy

My visit to the "other side" - lots of questions!!

2011-12-25T13:07:00.003-05:00

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Wow. Last night I had a very interesting dream. I won't say it was Epic as in the definition, but I would say maybe it was Epic for me. I had a really bad nightmare the night before (Friday night) and was up basically half the night and when I went to try and sleep, it was nightmares. Something about Bryant being missing and no one knowing where he was and us in a massive panic ...

So last night (Saturday), probably more accurately Sunday a.m. (I sleep best from around 5:00 a.m. on which is why I am rarely up before 10:00 a.m.

Okay here goes. In the dream I was presumably "dead". There is no information or surrounding story on how that came to be or when. There is also no actual information in the dream about where I was. It seemed like I was inside at the time as I was in a line of processing. Everyone was very calm and waiting but as usual, I was making a scene. Someone (I won't name) walked by (this person is not dead) and I was like "OMG!! And went to hug him but he just said "Go find your own family"). I wanted information and NOW! A woman (not a face I recognized came up to me and so calmly put out her hand and said "follow me").

I didn't ask what was going on, because I seemed to have a sense of calmness and non-urgency even though I was somehow conflicted and upset on another level. The woman began explaining to me the scenes I was seeing. An older man walked by me and I said "HUH! There should be no old people in heaven!" and she said "That's only how you are seeing things now. It usually take around 4 days or so for you to be able to "see" and accept the more spirit-like enviroment so you are eased into it". Okay, that made sense. Then I said, well how do you do it, is it the same for everyone? And she said "no" and said I'll take you to an active scene. We went to a house and a family was getting out of their car to go inside. Except someone was there explaining that they were no longer "home" in the sense of their physical earthly home. It was a replical. I remember feeling like "Oh No ~ the whole family was killed together!" probably an accident but they did not a memory of the actual 'cause' of death at that time.

That bugged me as well, even though I understood how it would make sense to ease people into it. I said "but what about violent death, like being rape or murder". She took me to a scene of a rape and I was so upset (still calm-like though which was wierd). Then, she took me to see the woman who was surrounded by family and over-joyed. In the Bible there is a scriputre that says something to the effect that the badness of all endured will not even be called to mind when the wonders of God are revealed. This is exactly what it seemed like. My questions continued "Well what about soldiers who die in war and other questions which have plagued me forever ... and she answered them all." Then I asked about famous people. She laughed and said yes, they are around but you'll never see them sitting around talking about their "Glory Days" because they move on. I was puzzled and asked what that meant.

She explained that the human mind is capable of forward progress (yes I know that's a football term and I was football giddy yesterday). Anyway, this particular type of forward progress was the on-going experience that people would experience in this new place, and that it was not possible in imperfect human state. I questioned that too, well how do you help people who are so sick, like with mental illness and stuff? She explained that the chromosomes of every one are brought in line with perfection, so there are no mistakes or anything and that helps to make the person"whole" and "perfect" to how they are supposed to be without taking away who they are. The bad memories or the mental illness, again, is not even in the picture because of this; as well as the calmness that seemed to bring a sense of peace and purpose to everyone (no one floating on clouds, sorry).

The things that seem so important in the physical world were not even an issue so no one felt 'better' than anybody. I then asked about hell. So is there a hell? She said "yes, in hell we torture people until they pray for environmental justice" or something like that but it was a joke. She laughed and said "there is no hell" you either make it here or you don't make it anywhere, just a state of non-existance.

At this point, I was giddy with excitement but one would think my first order of business would be to demand to see Bryant. However, I was so calm, now watching people united with family and also seeing "new ones" arrive and realizing they were dead but seeing their welcomers estatic to see them. Almost like when you are on vacation and miss someone and wish you could share the experience. In this case, even though seeing someone would mean they had died, no one was discussing manner of death or anything like that, but instead, they were all ready to go and begin the "real life". It was so incredible.

Finally, basically satisfied with my answers (I asked a gazillion questions) I asked "but what if you still have a grievance?" and she said "Then you go see the Almighty" and I said "Yeah how long is that wait for that" and she said "He's wide open, all day, no wait". And I was like, "wait, what" and she said, all the desires are filled (another Bible verse). She did not seem irritated at all with my questions and reluctance to believe such a place could be. The thing was, it wasn't strange, like fake. It all made sense and that was part of the calmness. I remember feeling "Man I can't wait til everyone sees this".

I may add more later when I remember specifics but the dream was very detailed and there was a lot of chatter in the dream between me and my Guide. This is generally unsual in dreams to have that much talking without something wierd coming through, you know, like an elephant or other random thing moving on through so you know you're dreaming. The calmness and peace was incredible but it didn't 'numb' anyone or me, just made evereyone more curious and industrious and I guess, the key word, satisfied.

Many of my dreams (except the Epic Ones) have resulted in my waking either crying or otherwise upset, sometimes for days after. But this one, like the Epic Ones, did not do that. In fact, I woke up around 9:00 a.m. and was like NO WAY I am going back! I went back to sleep and kept dreaming until 11:00 a.m. Remember I had A LOT of questions. There was just so much to the dream, so many details. I will have to try and remember them all and write them down immediatelay so I am sure to be updating this soon with more specific details, because I had questions about everything you can possibly imagine.

Hey Bryant, maybe you were my spirit guide in disguise, ya think? Or more likely you were off doing something waiting for me =)

xo xo Mommy

Legacy of Love

2011-12-23T18:54:00.000-05:00

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Today was an interesting day. The day before a break ... the kids have next week off ... Holidays are here. Lots going on with everyone. I was the "Host" of the Winter Break Party and it was crazy. All good in Liam's Class. Kids just have so much energy :) So I was trying to put kids with parents, you know, match faces and stuff; and I asked this one mom - which one is yours, etc. And so we started talking. Now here's the odd part. I wear Bryant's Necklace all the time. I assume people see it and know who he is, especially around Town and at the school. So we're talking and somehow we started talking a little about Bryant and she said she was sorry ... and I thought, how can they not know ... but whatever and then she asked me if Christine Large took care of Bryant. Christine was Bryant's nurse for 10 years+. She met us on 9/11 - really THE 9/11 and in the chaos and sadness of that day, for us, a beautiful relationship began. So anyways, I say "Yes, she did" and the woman then says "Oh wow. I feel like I know you and I definitely know all about your son". She went on to tell me how Christine used to talk about Bryant all the time and how much Christine loved him (which I know, see post below with Christine at Julia's Orchestra performance).

Christine is like family, definitely a beautiful person inside and out. What struck me, though, after the conversation ... I went to feel my necklace and realized the whole time, it was twisted around to the silver side (no picture). It amazed me how I was drawn to this woman and how it made my day, even with all the joy and happiness and electric energy from the kids' party, I was overwhelmed to know really how far-reaching love and connection is and how Bryant continues to guide me and lead me to some form of peace. So today was a good day. Just because ... Christine was faithful and true and she did a lot for Bryant because she chose the moral high road (long story but involves who else, the school system...).... anyway a lot to be grateful and thankful for. I should add that it was totally chaotic in the class with as many parents as students and somehow, I connected with this woman who knew Bryant. Made my day Bryant. xo xo Mommy

Scholarship/Fed Ex-Kinkos

2011-12-21T19:35:00.002-05:00

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Playing the Harmonica through the trach :)))) Bryant loved Music ~

Bryant's Scholarship is being handled by TD Bank. Donations can be made to TD Bank, 2 High Street, New Boston, NH 03070 ~ payable to In Memory of Bryant Paquette.

I had posted about FED EX and some of the issues; am glad to report that they did get in touch with me and I did have Bryant's cards printed up and they gave us a 50% discount. So kudos to FedEx and thank you!

Oy Bryant. Mommy misses you, xo xo

How the Muppets Changed our Lives

2011-12-18T14:55:00.000-05:00

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This is the cake we had at Bryant's Celebration of Life. Anyone who knows us, or more specifically Bryant, will know his intense love for the Muppets and Sesame Street (Disney too!). Well today, I went to see the Muppet Movie with Bryant's surviving sibs, Julia and Liam, Bryant's Dad, Bryant's Aunt Lori and cousin. I was not sure how I would react, pretty sure it would be emotional but instead, I was totally enthralled by the movie. I cried myself silly at Toy Story 3 thanks to the opening song and video montage in the movie ... but the Muppets was different ... here's why.

The beginning of the movie introduces us to a new character, "Walter" who I would say is a thinly veiled Bryant, at least in my World. So Walter grows up loving the Muppets, even when they aren't popular with everyone else. Walter does not age, while his brother (not a Muppet) does age and becomes a man, pre-occupied with his life as an adult (see the connection here .....)   ?     So they take a trip to visit the Muppet Studios in California (strangely enough I must insert here the fact that the CF Convention is going to be in CA this upcoming Summer which I am planning on attending with the family - Julia is plotting out the trip).

Last week, at the Candle Lighting, as I blogged, I had a huge Revelation / Epiphany Moment about Bryant and how he continues to be part of our lives, if only I can "see and listen" to the direction instead of being stuck in grief and anger and sadness.   The movie plays out in typical Muppet Fashion and I have no doubt Bryant would love this movie. At the end, though, is the pivotal scene, where "Walter/Bryant" must make a choice, to stay with the Muppets or go back with his human family. It's really a great moving type scene, at least form my vantage point, and seeing how things do shift and change, but even though that's a movie and mine is real life, I see Bryant did make the choice, albeit not completely without sadness and conflict, but the choice did not involve leaving us entirely. And that is clear.

So we begin to plan our cross-country California Adventure, complete with a Disneyland visit and again take pause to "listen" and try and move forward WITH Bryant. xo xo Bryant I miss you but I know you're near <3   Fly free Beernuts!

Miracles? All around us...

2011-12-16T15:29:00.001-05:00

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I forgot all about posting this since it happened so long ago and while you were alive. Probably one of the strangest things to happen to us. As I have blogged before, your survival and birth are nothing short of miraculous, really beyond medical explanation. Obviously, once you were born, many medical interventions were taken (including surgery, the trach, g-tube and life support). But in utero, your survival is almost miraculous because it defies any other explanation. I won't get into the technical medical stuff ... because I am focusing on the other miracle...

We were driving back from our DisneyWorld trip. Lynne & Don and Family were following us. We had left the Resort early, in hopes of getting a good start on the trip back home. We went to Dunkins to fuel up on caffeine and then we got on the highway near the Route 4/ 95 merge, which is heavily traveled. By now it was around 8:00 a.m., peak travel time, not what we had hoped for. We were in very heavy traffic, four to five lanes wide, basically bumper to bumper. That's why we didn't see it coming. Suddenly in front of us was a "boat seat" (we would find this out later) but in any event, an object was in our path and daddy swung around it to avoid it. Lynne and Don, never saw it coming either. Horrified, I knew they would be killed, there was no time to react. Coming over a crest of a hill with 18 wheelers and other traffic all around us, I screamed NO and said "Oh My God, I am going to watch my sister and her family die". It all happened within a second, like life flashing before your eyes and I looked in the side view mirror to see Lynne in a full 360 spin as they hit the seat (wood) head on. I knew they would be killed instantly because there was so much traffic.

What happened next, I will only one day understand, but definitely not in this 'life time'. I could not bear to look and continued my shrieking and Daddy said "no no ~ they are okay" and I looked again and there was Lynne's car in the middle of the highway, all alone (as we were) and she was able to correct the spin. We all pulled over, still not sure what we had hit. I expected many other people to stop and as I exited the van I realized it was quiet. Almost dead quiet. An eerie quiet that I have not ever heard again. Lynne & Family pulled up behind us, in the breakdown lane and I was almost shocked to see no one around us. Suddenly, a car pulled up behind us and I was like "FINALLY! SOMEONE STOPPED" even though in the moment I didn't realize there were no cars .... we were completely alone. So I said to this person who stopped, "DID YOU SEE IT" and the person looked quite puzzled and said "yes of course I saw it, I am the one who dropped the seat". The man was pulling a boat and apparently the boat seat had become detached. So this person had time to continue on to the exit, get off, get back on the highway and pull behind us.

Once we realized he was the one who dropped the boat seat and no one else seemed to be around, while just moments before we were in bumper to bumper traffic, I glanced over to the crest and like a wave, cars began to pour out ~ as had been the case all morning. We called the Police and it took them around 45 minutes to come. When they arrived, the Police Officer informed us that usually the calls along the highway were fatalities and that's why he didn't come right away ....

It didn't dawn on us what had happened because we were so freaking nervous, high on adrenaline, thinking we almost all got killed. Our van smoked from the pieces of wood stuck within the engine ... apparently this guy had a thing for solid wood boat seats.

This is something I will never fully understand, what happened that day? Where did all the cars go? It is impossible that there were just 'no cars' because we were in heavy traffic. And once we were on the side of the road (breakdown lane) and the guy came back (which means he had to have gotten off the highway and then back on, how much time would that be) and during that entire time, no cars went by? No trucks? Nothing, just a nice serene quiet highway? In the moment, it seemed deafeningly quiet - almost a bizarre sound I have never 'heard' before, more the absence of all sound.

It really makes me wonder what happened? And why it happened. And realize that miracles are something beyond understanding.

xo xo Mommy

Quiet & Stillness

2011-12-15T16:53:00.000-05:00

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Bryant ~ I think you would be quite pleased with the past few nights ... Julia played her clarinet in the Band Concert on Tuesday and her Cello (above picture) on Wednesday. I also went to a Dinner with High Hopes on Tuesday night (tough juggling the two but I did ok!). I think you would be proud of the progress so far ...

Lately the night have been a bit better. Still no super good dreams but the nightmares have let up. I hope that's for good because I will not miss them. The nights are still by far the hardest, but I do think my Anger is being to subside, maybe I hit an all-time high, not sure, we shall see. Baby steps. Sometimes in reverse. A lot of falling down. Getting back up. Some days, just plain staying down and letting those emotions have their say as well.

All the emotions do seem to 'speak' to me, the issue, which is quite important, is listening. As everyone knows, I am not great at listening, much better at 'doing'. But I think now is the time for quiet reflection and listening. I am considering a 24 hour meditation, perhaps over the Holiday Break. This will require a quiet place for me and no interruptions. Much easier typed than done I am sure . But I do think I am in great need of quiet and stillness now, to listen and perhaps, get the answers to my endless petitions.

I have never really found peace in quietness; but I have never had to. Life with you was out loud, all the time, no stopping.

So now, it's a strange thing for me to even contemplate the reasonableness of this. I have made multiple supplications and rants, raves, screamfests, and am ready for the answer(s). Not really sure if I will necessarily agree with the answers, but they are worth listening to ... and perhaps may send me in the direction of further questions for more searching ... I am sure it's an on-going process.

Perhaps the deafening pace at which I am going is not sustainable (I am pretty sure that is Truth) and that in order to continue along this journey, I need to select a path. I feel like I am jumping from here to there on different paths without really going anywhere. All the words bounce around my head, dancing with a frenzy that is sometimes, more often than not, loud and confusing. I try and focus them, and try and settle them, but it's almost like they just break free and run amuck in my head. Generally it's because I am talking to myself in my head and answering my own questions, which is not working out well. Therefore, the meditation.

Christine has been so helpful. She has always been a "do-er" more than someone who says a lot. And I am thinking that perhaps I can reflect that if I really work on stilling myself, at least temporarily. You were also a "do-er" and I was able to reflect your love and goodness ~ it was able to at least somewhat tame my inner craziness with the endless words and super-highway in my head. The emotions go up and down, from euphoric at times to utter despair and sometimes all within the same hour, never mind day.

So I will let you know how this works out. It is finals week and I am straight out with that. So hopefully after this weekend I can begin a new line of study into quiet reflection. Julia is amazing with the Cello Bryant and I know you would have been with us, front and center at the Theatre at the High School, applauding the show. You loved music and it's really a tribute to you when I hear the beauty of it and see it personified within your siblings. We all miss you so much ~ and you are never far away (if ever away at all) from my thoughts.

Love you xo xo ~ Mommy

Candle Lighting & Greater Understanding

2011-12-11T22:43:00.001-05:00

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Wow. Yeah. So tonight was the Worldwide Compassionate Friends Candle Lighting. Around the Globe, 24 hours, candles glow for the lives gone way too soon. We were trying to decide whether to smile or not smile for the picture, it seemed kind of strange to smile and then also strange to not smile and there's not an in-between (although our faces probably communicate the confusion pretty well). It was an amazing experience. Our particular Chapter's Candle Lighting had about 700 people or so. It's just so - beyond words really - to imagine that many children gone. Everyone has their story, wearing their pins / photos ~ sharing stories, laughing crying.

Well for me, it's been rough ~ I have continually posted about the issues with Anger. Really pretty much just because Bryant isn't here. Obviously. But the life we had with Bryant has shifted and I now realize that is a choice. All of my posts talk about what Bryant taught and how he lived and how I need to pay attention to those lessons. Well tonight ~ it became really clear to me what needs to happen.

Bryant's life was a gift. The fact that he lived at all, surviving the pregnancy and then all the illnesses and dire predictions is just nothing short of miraculous. I always made sure my foot was on the pedal - to the medal when it came to Bryant, because we had to make the most of the time we had. I knew his life was a precious special gift. Bryant's life took us in all kinds of directions. Definitely places and experiences that I never would have had nor imagined had he not been a part of my life.   I've said this before too, I shudder to think what I would be or who I would be had I not had the Grace of God right there in front of me for 20 years.

So here's the Epiphany of the Day and hopefully for the future. While I grieve the Loss, I also let the grief win; I let the horrible day that Bryant left us physically reign wild. I am angry, mad, pissed ... and that can consume someone. And after all the lessons and all the places ... like Dr. Seuss "Oh the Places You'll Go!" - Anyone who knew Bryant knew he loved Dr. Seuss.   Because of Bryant's set of life circumstances, he led us to incredible wondrous places. So there I am, sitting at the Compassionate Friends Candle Lighting, crying, grieving ~ but listening to the poems and other readings and I realized, you know what?   Here I am with three amazing women! Two are my own children, Emily and Julia and the other, Bryant's nurse Christine, who is one of my most trusted and best friends ~ Bryant brought us together. And here we are sitting together, grieving our Loss. But in the Loss, there is the Gift, that which IS Bryant's life and his legacy.

During Bryant's life, we advocated, we filmed video / commercials, we did all kinds of things and I will tell you, it was powerful.   Experiencing life with Bryant was always amazing. Even when he was sick; life was amazing. And that's when it hit me, he is STILL bringing me places, having me meet people, leading me. The next Compassionate Friends Conventions is in California. I thought it would be awful and depressing because Bryant never got to go to California (never would tolerate the plane ride). Then I thought, but he is taking you there, don't you see it?

The words bounce around my head and I try and catch them and make them form into something concise that will explain what I experienced. I think I have made a step forward ~ with Bryant ~ and with my family to understanding that Bryant can continue to exist and be a part of our life in everything we do because we are who we are for knowing him. That isn't ever going to change. There is no going back and sometimes that's hard in itself. But to embrace it, and to understand how much there is still to be offered by Bryant ~ wow. It was pretty amazing.

So perhaps I am emerging from the Anger. I tell you, that in itself would be miraculous thing. Just the other day I blogged about how I am perpetually stuck in Anger. But tonight, even with the sadness and the grief and seeing all those beautiful children flashed up on a screen, knowing their lives were cut short, I understand that Bryant's Life continues to have meaning if I allow it to. Or I can screech to a halt and stay stuck..... saying that it is awful that Bryant isn't with us, he can't go to California, or Paris or anywhere we may go. The thing is, that's not true. He can.   He is in all of us as are part of him. So begins the Journey WITH Bryant as an intricate part of our lives. I can't wait to see where he is going to take us :) Let the adventures continue Bryant!!!! Love you xo xo Mommy

Amazing Grace

2011-12-07T20:32:00.000-05:00

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Last night, I was having some ear pain, nothing much, just annoying. Decided to try peroxide. Worked okay, they are still kinda clogged, but it's that time of year and everyone is sick it seems. I think the tenant above the office is sick. Julia and Liam have been sick for weeks and Lilly is sick too. And I started to think about you and how I'd be freaking out right now hoping against hope that you would stay well and not have to get sick. Every Winter, every illness in the house, you'd get it, no matter how much bleach I used, no matter how hard I tried ~ but I was on it and tried to make sure you were comfortable.

I used to get this "sick" feeling in my stomach .. I'd know. You were starting to get sick. I would hope maybe it would be an easy one, that you wouldn't need life support or other major interventions. I dreaded if you got a fever, would you so into status (non-stop seizure)? Would it happen at night? I was so happy, delirious almost when we got the cough assist machine. You loved it and you'd ask for it ~ "I need to cough" and I would oblige :) I remember sitting by your side, watching you breathe, waiting for the Tylenol or Motrin to take effect, break the fever. Waiting for your head to have sweat on it, meaning the fever broke. Dry skin was a bad, bad sign ... I'd watch you breathe, silently counting in my head - is he back near baseline yet????? I would check your SA02, adjust your oxygen, get the CPAP ready, call the doctor, start our protocol of steroids / antibiotics - 1/2 strength feeds ... the whole drill. It's still as clear as day.

So I was driving home, feeling kinda sick, wondering if I am getting a cold. I thought of all the times you were sick, when you were small and couldn't tell us. The time your ear drum perforated and pus came out. You were so tiny. And the time your g-tube migrated into the pylorus, causing your stomach to become distended, causing you to sweat profusely ~ then it starts Bryant. The anger starts to swell and I want to scream. Even right now, I had to stop, catch my breath. Crying as I type. Why did you have to go through so much? 25 operations? Drowning in your own saliva for 2 years. Enduring one procedure after another. It's maddening Bryant and I am so freaking pissed I just sometimes do not know what to do. When you were here, it was easy. We would get through another storm and you'd be back in the saddle in no time, whirring around in your wheelchair, causing mayhem, laughing, smiling - you were Amazing Grace. I was allowed to see the infinite beauty of God and of Love ~ the amazing spirit.

On the one hand, the thoughts of you sick and suffering are now almost too much to bear. I think of your body, laying there, looking so peaceful, but knowing you were gone. Daddy and I trying so hard to bring you back ~ and then having to see you at the Funeral Home. Sometimes I wonder why I'm not completely insane, although some may argue I am. I know I am completely angry. Just sooo soooo angry. You were never angry. And it's not because now that you're gone I only remember the "good times". You just weren't angry. You were, Amazing Grace. In my life. In the lives of your brother and sisters. You gave 100% ~ all the time. You loved life so much, even with all you had to endure. You'd smile and tell a joke to the staff at the hospital after being brought back from the brink of death. And that's not an exaggeration. I remember it all Bryant. The time you had chicken pox and had a fever of 107. Incompatible with life! You were in full status for over 2 hours. Finally after drilling into your shins and icing you down, you stabilized, they called the med flight and off you were. Comatose for days, yet you would smile and then you signed "LOVE". The Nurse nodded to me, she told me "I'm glad you got to see that" her smile only briefly there, for she thought you would die soon. Your liver panel was awful. Nothing was good - you had been to sick. And then you were awake. Slowly at first and then, as if nothing happened. The doctors befuddled.

Oh it happened again, time and again. Dramatic stuff. The time you spiked to 107 again and you were hypovolemic. Transferred again ... I rushed to your side - I saw the doctor in the hallway. He said to me "Oh you've lost weight, you look good". I thought he was insane and had the wrong person. My son was near death. Surely he thought I was someone else. I didn't bother to chit chat with him, it was 3:00 a.m. Then I heard laughter ... a male voice. HA HA. And then I heard you. Apparently you had decided to tell jokes to the Respiratory Therapist who was hooking up the life support / ventilator. But you wouldn't need it long. You were fine the next day once they got fluids on board. Who can do that?

And the time we rushed you to Boston Childrens. You were so sick. Laying in bed, sick watching movies. We always brought your VHS and then later DVD'syessss...." and thus began a friendship between you and the Spanish-speaking personnel who all came in to see this wonder boy who spoke Spanish and English on a computer generated voice (computer). It was like a party in your room all the time.

I am not crying now, I am laughing to myself, picturing you. But it doesn't last long Bryant. The Anger continues to consume and control me. I do not understand why you had to go nor why you had to endure any of that crap for 20 years. It makes me so furious. But you never missed a beat. You'd get well and we'd go on, our trips to Disney and all over. Always living on the edge, always loving life.

Lately the orbs have become more intense. Purple ones. At Peace with God. I do a lot of praying and quit a bit of bitching to God. I wonder how he felt when he had to watch Jesus die. Actually, I don't wonder, because I know. I had to let you go ~ and it was unfair. The purest most beautiful person ~ to watch you suffer for so long - but also to watch the wonder of life that was in you. Amazing Grace, Amazing Spirit. You were one with life. You never put any conditions on life.

I get lost sometimes Bryant. Just lost and drifting. The thoughts of your suffering become overwhelming and the anger takes over. It was such a small part of your life, you were much bigger than that, larger than life almost. I've posted about that before.

It's hard to grasp Bryant. The "Why" of it all. And I pray and plead for Amazing Grace. xo xo ~ Mommy

Platitudes & God

2011-12-05T15:46:00.001-05:00

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Platitudes. The Dictionary Says: Flat, dull, or trite remark, especially one uttered as if it were fresh or profound.

The one I really hate? "God will never test you beyond what you can bear. He knew you were strong so he gave Bryant to you."

Usually they then stand back and seem to appear proud of the profoundness of this Revelation, which is nowhere to be found anywhere in the Bible. Nowhere. I believe most people utter it 1) because they've heard it said before and 2) they think it means 'it' can't happen to them because they are not strong. It's like a reverse compliment.

Any of us with children who were born with severe medical issues would have traded places with our babies in a heartbeat or even given our lives so that our children would not suffer. And any of us who have lost children to death would also change places with them in an instant. These deals, however, are not offered. So we carry on and do our best. The thing is, this didn't really "happen to me" as much as it "happened to Bryant", my son. I did not go through 25+ surgeries, have a tracheotomy in my neck nor a g-tube in my stomach. I did not endure countless hospitalizations for pneumonia or have IV's drilled into my shins without anesthesia during a 2-hour seizure. But I did watch. And I lived it WITH Bryant; but he was the one who had the strength and he was the one who taught.

I believe in God, don't get me wrong. Perhaps I know the Bible a little too well to agree with such a nonsensical quote.

1 Corinthians 10:13 = There hath no temptation taken you but such as is common to man: but God [is] faithful, who will not suffer you to be TEMPTED above that ye are able; but will with the temptation also make a way to escape, that ye may be able to bear [it]. (King James Version). The word is "tempted" not "tested". And even so, one wonders what happens if you 'fail' the test and you put the child in an institution, as was the case in the earlier years (State Institutions commonplace) or if you somehow otherwise fail.

Psalm 127:3 Behold, children are a heritage from the Lord, the fruit of the womb a reward (King James). Again, many would agree our children are a gracious and generous gift from God. Even the damaged ones. Yet, for some reason, while the platitudes abound about "God" being the Mastermind of these children; Society does not seem to reflect that, except when they utter the platitudes to us and then walk away .... leaving us to feel slightly confused and bewildered on how they know about our "strength".

True, there are many understanding and empathetic people who do understand (these are not the ones usually uttering the above platitude). They pitch in and help out. They get it.

Ecclesiastes 9: 2 ²All [things come] alike to all: [there is] one event to the righteous, and to the wicked; to the good and to the clean, and to the unclean; to him that sacrificeth, and to him that sacrificeth not: as [is] the good, so [is] the sinner; [and] he that sweareth, as [he] that feareth an oath. (King James) this basically says good and bad come to all; both good to good; bad to bad; good to bad; bad to good ... another version puts it "Time and unforeseeon occurrence befall us all".

To somehow imply that God chooses people based on their strength is kind of curious. I do know that the Bible also says "In your weakness, strength will be revealed" but that means that in our weakness the strength of God is made known, not our own. God gives us strength.   Here it gets kind of murky when you deal with any type of platitude because you can spin it any way to make yourself feel good. But at the end of the day, God did not make Bryant's chromosomes do the funky dance because God knew I was strong. If anyone believes anything in the Bible, they must believe the fundamentals of the Bible - God's Sovereignty and how it was challenged - "Through one Man (Adam) all have sin; through one (Jesus) all are saved" ~ we all have sin / thus imperfection.   Good and bad people, we all inherit this "sin" or imperfection. So by telling me God "chose" me and that was because of my "strength" that does not somehow let them off the hook of "it" happening to them. We do not not control that; unless we have prenatal testing and decide to interrupt the process of imperfection ever happening to us. And some do that; and some do not 'hanlde' it, many have depression, breakdowns, marriage break-ups, putting the child 'away' etc. But this happens to regular children as well. Perfectly healthy children are abused, neglected and worse. Why? Did God know their parents were weak so he sent them a perfect child so they could damage it? Huh?

If you've read anything on my Blog, you know I do believe Bryant was a Gift from God. Not because of his disabilities, but because of his spirit and his soul. His love of life and the way he handled life with grace. He taught me. My other children teach me as well and I shudder most times wondering what I would have been as a person without Bryant. Without knowing that type of pure love. What I do know, though, is that not everyone accepts their "gifts" and while it is my opinion that Bryant is a gift; I know that God does not want any suffering for his 'children'.   He does not take any pleasure in sickness or death. That's why Jesus came and why Jesus healed. He didn't tell the blind "Hey it's cool pal, God made you like that. I am not going to restore your sight". Nope. The Bible tells us that he felt pity and made them well. The Blind, the Sick, the Deaf, anyone who asked.

God does give us the strength, many of see the determination in our childrens' eyes and are guided by that and by the knowledge that God will grant us strength. I believe, for me, that God was and is with Bryant. I believe God allowed me to see the incredible wonders that Bryant brought to our lives while he was with us. And for all of that, I am thankful. I am not thankful, nor have ever been, for the platitudes of those who have no idea what they are talking about. Sometimes it's better to say nothing at all. Don't admire my strength because you know nothing of it.

This continues on now with Bryant's passing. The platitudes come and sometimes they are just so annoying. I think what happens is this disconnect, almost like an isolation of knowing places and feelings and experiences most other humans will never know. And there is no way to explain it or communicate it without them having to actually experience it. Which is where perhaps the temptation comes in. The temptation to slap someone in the head ... you know that kind....

But that's another story :) For now I am thankful to God for Bryant and my kids and my Life. Maybe I should consider myself "chosen" ~ and sometimes I do =)    Always thankful for Bryant, xo xo Mommy !!

This, of course, could be an

2011-12-04T17:48:00.001-05:00

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As a little sidenote I should also say, I am happily awaiting a 7:00 Skype as I help organize and plan a wonderful reunion for the C22C family, which I am still a part of even though Bryant has passed. No one in this group needs to be the "star" and we all are hoping for a wonderful time for the kids and the big kids ;) at Disney.

The Spirit of Giving

2011-12-04T14:55:00.001-05:00

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Happier times ~ Bryant with my dad (Grampy) and me during our "Family Day" ~ December 2008.

So it's the Holidays. We never did the "traditional holiday" but instead did / do Family Day which happens to coincide with the regular Holiday Season (we celebrate our Wedding Anniversary/Family Day - December 20). So we are out there with everyone shopping. Plus, of course, some of the deals are just too much to pass on.

I am always involved in some way with my kids' school. Always a Room Parent or at least signed up for one party. This year I have the December Party. It's actually fascinating to me how anal parents get about a one hour party at school for the Second Graders. To me, it's just the typical thing, arrange who is bringing food, gift exchange, games. The schools are toning things down and prefer to have healthy snacks and shorter parties (versus all day celebrations) particularly as the kids get older.

So I sent out an e-mail informing everyone of a thought the teacher and I had. Maybe we could do a donation to the Humane Society instead of the traditional "under $5 gift exchange" where the kids buy something "under $5" (basically useless plastic that is broken before it gets home) and instead do the party but have the kids buy something for the Shelter or give a monetary donation. Pretty simple, straight-forward and the kids get to help animals, get their picture and a story in the local newspaper. It's all good! Or not.

Most of the parents on the list are fine with it. But there are always the one or two who have to be the "stars" and have to have the focus on them and have to make a big deal out of something so simple and easy and manage to ruin the spirit of giving for everyone because they are so selfish and self-centered. One in particular wants the job, full-time of party planner for the school for all the Holidays. I have no freaking idea why anyone would want to do that but I guess it's some sort of unmet need emotionally where the parent feels by doing so, they are therefore "important" somehow. To me it's just work and I like to volunteer for one thing so my kids know I am involved and around but I certainly do not want to be the "star". Another one, a friend of this "star parent" decides to e-mail me as well and tell me she needs to know what we are doing "sooner than later" because she usually has her shopping done by now (this was last week by the way, not even in December yet at that point) and she does not wish to be out shopping the week before Christmas.

So I e-mailed her back and told her it was well under control and I have no intentions of having her shopping so close to the Holiday and actually she's under no obligation to do anything anyway. She e-mails me back telling me I am rude, bla, bla, bla. Really? So I e-mail her back and inform her I am not rude, just answering her moronic question(s) and I am busy also trying to coordinate the Memorial Scholarship for my son who is dead and get ready for the Candle Lighting. My other son, Liam, Bryant's brother, is going through an intense period right now of anxiety as well (due to the passing of his brother) so I am trying to deal with that as well as you know, the regular family stuff, and facing another year without Bryant for Family Day. So maybe she should count her freaking blessings.

I cannot wait to meet this crazed person. I want to ask her what would be so stressful for her to take it out on me? But I actually don't really care. I guess right now I am too busy trying to decide if I can make it through the Muppet Movie that my kids want to go see because the Muppets were Bryant's favorite. Thankfully it's dark in the theatre and while I cry through the movie, maybe no one will notice. I see all the stuff coming out and how much it would have thrilled Bryant, he loved technology, so I buy the iPad with much sadness because only days before his death, we were at the very MAC store where I purchase the iPad. And I struggle to figure out what to do about Liam's anxiety over the death of his brother. Meanwhile, back at the Farm, this other parent bitches about being done her shopping and not wanting to be put out at all by anything. Wow.

This picture is of Bryant shortly before his passing. We were there to get a new iMac for him :(

Bryant would laugh. He would think it's funny that anyone could be so anal and obnoxious and he'd move on. That's what he taught me. But still, even though I know this, it bugs me that people think they can talk to other people this way or treat them this way over a stupid party which is well within control and will go off without a hitch. And we will give back to our community and help the Humane Society. All the OTHER parents think it's a fantastic idea and can't wait to be involved and support this. None are bitching about anything. Except this one (and her friend) who must be the "star" of the show. My life will never be like that. Bryant was way too good of a teacher to allow that. But sometimes I do wonder what it's like to be that shallow and anal.

So now I'm ranting. Probably because on the heels of this Holiday Season comes the dreaded month of February through March. Bryant was born 2/1/89 and died 3/21/09. 20 years. So basically December through April are a major suck. We are making plans to avoid a repeat of the "gut punch" situation I went through last year. Now I know what to expect and will take proactive measures to do something positive. I have Bryant's Scholarship going .... we are going to be ramping that up in February / March and hopefully have a nice Memorial Scholarship for a high school senior who is interesting in pursuing some sort of change / advocacy in the future. We need more people who are more concerned with positive energy and the love of life that Bryant possessed so easily and naturally. Bryant made change, he made things happen and he made life so much better. I am trying to be more like him; trying to realize there is more good than bad; but man the bad really bugs me. Even over a stupid one hour party. I see Bryant laughing, waving ~ moving on - not worth his while .... it was so much easier when he was here to laugh. I miss you tons Buggy ~ Mommy <3 xo xo

Thanksgiving

2011-11-24T13:03:00.001-05:00

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Today is the day we have decided to call Thanksgiving. I was raised to not put so much of an emphasis on ONE day, but the thought was that we should be thankful every day. This is all good in theory, but I think sometimes the world can just grate on you, make you see the harshness, cruelty, sadness and ugliness of what surrounds us.

I was upstairs, reading through the newspaper, browsing the frantic ads for BLACK FRIDAY (which is now technically today for most stores....). Anyway, my new kitten, Simba, was sitting on me. He has to be on us at all times or at least near us. So cute and cuddly and perfect and clearly oblivious from the realities of the awful terrible world. Which is partially what triggered the thoughts on the beauty of the world. Something as simple as a tiny kitten, the wonder it sees in everything, even a dangling string, is just amazing to a kitten.

We have been provided so much beauty in the World, yet it is clouded out by the darkness and misery so many times. Losing Bryant was the most awful horrific thing ever. He was beauty and perfection personified, so close to God, so resilient and such an incredible soul. Bryant had "old soul eyes" like he had seen so much, even as a tiny infant, but in a good way. Like he was always leading, always knowing and always my solid rock. Really for the whole family. Bryant was forgiving and never mean or hateful to ANYONE. And it's not because he didn't "know better" it's because that's who he was.

It's hard to ever be like that; at least I have found. I find myself angry, consumed almost by anger that he had to leave. Angry that his brother and his two sisters have to have seen and know such pain. He had so much to give but there is something inside of me that knows ... that he knew .... that the day would come that he would have to go. He was medically fragile. He had already survived 20 years, 1 months and 20 days more that they had expected. He was given 24 hours by the medical team at the time. Bryant had other plans.

So I try and focus now on what it means to truly be thankful. It means that to be thankful, you have to understand there will be things you are NOT thankful for. In order to understand appreciation, you have to know what it is to not have something. And I don't necessarily mean this in material terms although it is often perceived that way and that is because we are physical / sight motivated. But at the core, is the essence of who we are, and Bryant taught me about that. He taught me to be thankful for things I took for granted and for things I never would have even noticed before. And that's a Gift. So I am thankful for Bryant and all he taught me; just as I fight the intense anger that he is no longer here. I know it must have been hard for Bryant, knowing he had only so much time and so much work to do. And such a weak subject (me).

So I have decided, not because it's Thanksgiving, but because living any other way is just miserable. And knowing Bryant could have easily chosen that path. A path of hate and anger and misery; and who would have blamed him? Instead, he woke every day with a smile and love in his heart and a "what's gonna happen today" attitude. Meaning, what was he going to MAKE happen, to make every day, a special day. Somehow he found a way. Some were pretty big moments! Others were just little things, but still at the end of every day, there was some beauty that Bryant had been able to show us.

There is a lot of pain and misery and hurt and sadness. There is horrific stuff that happens every day. I am not, and will never be PollyAnna. Except when it came to Bryant. He could do that to anyone who took the time to listen and to learn from him. Living a life of anger and hate and hurt, it's dangerous, it's unhealthy and it's certainly out of character with everything Bryant represented. He tried to make the world a better place with his advocacy work or, in some cases, just a smile and an "I LOVE YOU" signed emphatically (sign language!).

So I guess I will try and live more in the moment, (a Bryant lesson), an open heart and an open mind, to the possibilities that are around me and the ones maybe I can create and the ones sure to come. I also know that life is what it is, but to focus squarely on the bad only leads to being unthankful for all the good. It's a choice and it's a choice that has to be made every day. Not just in a blog or like in the movies. Every day. So it's a challenge and that doesn't mean it doesn't hurt, suck and that doesn't mean I am not significantly changed both by Bryant's goodness and by Bryant's passing.

For today and hopefully for most days, I will be thankful for my surviving children who make me laugh and smile every day. They drive me nuts, but that's their job as well. And for my soul mate. Someone who I love and hate, sometimes at the same time, but who has been with me for 24 years and who is the most incredible father and man I will ever know. Life is not perfect and a lot of the times it's painful. But in those times, there is sometimes a choice. And it's my hope that I can spot those times, when I do have a choice, and choose to live with gratitude for all I have had and will have the privilege to experience. And I suppose, it's knowing Bryant still makes an impact. I just need to let myself see it. He's everywhere.

I love you Bryant. xo xo I love you Emily. I love you Julia. I love you Liam. And I love you Dave :)

Messages from God :)

2011-11-21T20:12:00.001-05:00

So after some four nights of intense nightmares I wondered if maybe it was something I was doing or somehow needed to readjust my thinking? I have had many negative emotions / thoughts and decided to try really hard to stop being to tense, although that's harder and harder to do when you have intensive, graphic nightmares. I tried praying, like really intense praying - begging for help. And then it came to me ~ I remember once hearing a Speaker talking about how we pray and do we ask our God Jehovah to help us? Do we hold our problems out there for him to take and then grab them back when we're done? Consciously or sub-consciously. Well anyone who knows me, already knows the answer! I am definitely a grabber. I do ask for the help but then think I can somehow figure it out as well. So I decided, you know what? I am not going to grab back this time. So I opened myself and thoughts to the Universe, to God and then I let it 'go' - at least as much as I can. And the result is the picture above. Some of you may have thoughts / comments on it. I'd love to hear them :) And yes, a big huge HELLO BRYANT! <3 Mommy xo xo

Bad Dreams

2011-11-18T18:17:00.001-05:00

Plagued by insomnia ~ no wonder. I have had 3 consecutive nights of intense nightmare. Basically they follow the same general flow. We are either notified or find out you have died and go to the hospital, where we are allowed to see you briefly and then they take your body and drop it down a shoot, like a piece of garbage. There are variations on it, last night I dreamed we decided to visit your favorite place, only to find it was a sham, all made up of cardboard and fake; and infested with bugs (specifically ants). It was disgusting and depressing and really nightmarish.

So I am not sure why I am dreaming these bizarre dreams. You didn't die in a hospital, no one called us, you died peacefully in your sleep. Obviously your body wasn't dropped down a hole like garbage, in fact, you didn't even go to the Morgue. I made sure you went right from the ER to the Funeral Home. So I don't know why I would dream worse stuff, the real stuff is bad enough. Like seeing you in your bed; knowing you were gone; doing CPR; trying like hell; and then having to see you at the Funeral Home. Through it all, you looked so peaceful and at rest.

I was talking with Christine at lunch and she said you were almost like a 'prophet' in your life, and I thought about that before she had said it, which made it all the more interesting because she was thinking the same thing I had thought. That's how you lived your life. And then she said that you were always on the look out for people you could help. And God knows you helped me.   You saved me. So the question is, now what? I was driving around and thinking about that and how I should be so joyful, I really should be so thankful. I asked God please to let you live, when the doctors gave you 24 hours, God intervened and clearly gave you 20 years. So I know that I need to really focus on that. Which is why the nightmares are all the more questionable.

I have been thinking good and positive thoughts and knowing how much of an impact you made, yet I am having these awful terrible graphic dreams. I hate them. One night I was stuck in it. I knew I was dreaming and I wanted to wake up but could not escape the cycle of the nightmare. I wonder if it's because I am somehow missing steps, you know, through grief. We all know we can't go around it, can't go under it, can't go over it ~ we have to go THROUGH it. But why these dreams.

I still have the good ones. I have blogged about the amazing dreams where you make me feel so happy so enlightened and they are so freeing. I would really appreciate one of these right about now.

I keep thinking of how much I miss you, but how much you gave me, how you saved me, and how I should live in the light of knowing you lived the best life you could. The life you were given and the life you made, the life I begged God to let you have.   Somehow my hope is through these nightmares, something else will emerge, something maybe to propel me forward a little more to greater understanding. That is my wish and my hope.

I am sometimes angered (well okay almost always) by this whole situation. That you died. It makes me want to scream and I actually do that, because you were so pure so beautiful and so loving. So full of love and goodness and forgiveness. I am your nemesis apparently. And I know that it's like accepting a beautiful gift and then being so angry when it's gone ... and not seeing the Glory of God anymore. And I want to so much. I want to see it. Of course, when you were here, I saw it every day.   Now all I see is red mostly, I am so angry, so mad. I am angry for myself, for Daddy and for your brother and sisters. I hate seeing their pain and I hate mine.

So what to do, what to do?! Is there anything to do? Or just hope it gets better? I don't know Bryant. I see you everywhere and I know that is a Gift too and I should be thankful.   I need to readjust my thinking to become more like you and to really receive the Gift.   And usually I think I have and the nightmares come. Let's hope it's some type of progress.

Love you,
Mommy xo xo

Friends

2011-11-15T20:21:00.001-05:00

Friends.

My mind is running a lot. Seems like it's on hyper-drive. My memory is definitely not as sharp as I would like it to be and sometimes the mind-numbing tasks (like paying bills) seem almost insurmountable.   It's such a shift from where I've come from. The harried and hurried days of having a child with a chronic health issue - I used to be able to do all his care and everything else, kind of like Superwoman on Steroids.   Then it was over, just like that. All over. Some of it was good but strange as well. After 20 years of trekking to Childrens' Hospitals and IEP meetings and this and that; it was suddenly, in one fell swoop OVER. All the planning and thinking and racing with time - DONE.   See I knew Bryant was on borrowed time. And I also knew that life without him was going to be much harder than anyone could ever imagine. That's because to most people, who did not know Bryant well, it seemed like it must be such a hardship, taking care of someone 24 / 7 - and yes, there is some truth to that; but not the type you'd think. The hardest part was KNOWING I was responsible for his life, his actual life 24/7. So of course, I was always on top of everything. All of that died with him - but what he left behind was not relief from care-taking or relief from the worry - my biggest worry and fear was always that he would die. So the worst thing had happened - he had died. I always knew he was our Rock our Anchor in life, the whole family's. So I was aware of all this and tried to race and outsmart time. And we won quite a bit. He wasn't supposed to make it past 24 hours and he lived 20+ years.

But that's all known stuff. It's been 2.5 years since he's been gone. Things have settled a bit and the fuzzy hazy feeling is faded, leaving the hangover phase, just sick feeling and not wanting to do anything at all, wishing for the fuzzy hazy feeling to come back. However, life moves on.

A couple things have been free-floating around my mind lately. One was a comment one of my CF Sistas made. Under a photograph of us at the CF Convention, she wrote "The Greatest Group of women I never wanted to meet". No truer words were ever written or spoken, at least as it concerns my feelings. I let that thought run around in my mind and kind of settle in. I then began to take a good look at my friends list on Facebook and in real life (sometimes the two overlap :) And I realized, almost everyone in my life is there but I never would have wanted them to be there. Almost all of them were hand-chosen by Bryant. Which leads me to the second point. One of Bryant's most favorite persons, Christine, said something today when we met for lunch. She worked with Bryant as his personal nurse for 10 years. They met on 9/11 - believe it or not and in the chaos of that horrific day, a beautiful thing began. A true friendship. Christine loved Bryant and Bryant loved Christine. She would arrive at 9:00 most mornings, to me, an awful morning person, but she was greeted by Bryant's enormous smile and heart. And then he would wave me off. Bye Mom.

Bryant knew how to pick them, that's for sure and unquestioned. The Epiphany for me was a cross between "never wanting to meet" and "Bryant's choice". When Bryant was born with all his medical issues and grave prognosis, I was horrified. I never wanted to meet the doctors, the nurses, the therapists, the teachers - EVER. I just had wanted a baby. But I got more than that. Bryant always seemed older than a baby, to the point I had remarked to my husband as Bryant lay in the Neo-Natal Intensive Care Unit - "he just doesn't seem like a baby". His eyes told a different story. Bryant always carried us. Always. Even then.

So what Christine said was in agreement, yes, Bryant did know how to pick people who would enhance his life but that wasn't the whole story. Everyone does that. We find friends who can help us or who we have something in common with. Give and take. That was the key for Bryant as well. He chose people not based on only what they could do for him; it was on what he could TEACH them, and this included me. I was in a race with time, never knowing when Bryant would get sick, how bad it would be, etc. But now, thinking back, it is quite apparent that Bryant was aware of that too. He never had the time for anyone who wasn't ready to learn. Bryant was always ready to learn; but he had a lot to give and teach and somehow, in the mix of it all, he was exactly where he was supposed to be.

Now I feel lost in a sea of being unsure, almost adrift. The people I thought would be there for me really don't get it. It hurts a lot. But then it becomes clearer, someone says something, does something and I can see it. Bryant already has that figured out for me. My problem is I am not listening anymore because he's not here physically. But he's still teaching. I glanced at my friends list and the people who are in my life, who have been there through this nightmare and who continue to be here for me. Thank you so much for sticking by me, thank you so much for wanting to know and for understanding.   Strangely enough, even with my new CF Family, Bryant has somehow maneuvered it so that I have found the most incredible women I never wanted to meet. They instantly know exactly what I am thinking or feeling. Yet, the odd thing is that our children only have one thing in common for the most part. They aren't with us anymore physically. Other than that, their stories could not be more different. Yet, that's the thing Bryant always was teaching, maybe I wasn't listening or learning, but I can see it now. He has made sure my journey is continuing along the path he laid out. I can't force it, I can't make it this or that. It is what it is, just as Bryant was who he was. He never apologized for that, and if someone wasn't receptive, he moved on.

I hope the lesson sticks. In the meantime, I have to be more like Bryant. Try and focus on what I have and what he has given to me. He has changed my life. Thinking of what it would have been like without him is without question impossible.   He is in us. He inspired us and changed us and I'd like to think he is proud of us. I miss you Bryant, but I see you every day. If only I just look :)

xo xo Mommy

Bryant's Quilt

2011-11-13T22:05:00.001-05:00

Bryant's Quilt.

We had this made about 2 years ago. We used his t-shirts and some of his pants to make everything - so even the colors on the side is from his clothing. I had it on my bed for a year but the cats were on it and I didn't want anything to happen to it so now we have it displayed next to the bed ~ I can take it off and use it at night and then put it back during the day :) It's full size so it's actually folded over in this picture. But I love it so much.

Will Blog again tomorrow Bryant. Had some epiphanies come at me today .... good ones :)

Love you so much and Miss you more than words could ever say ~
xo xo Mommy

Reflections from Emily

2011-11-08T19:24:00.000-05:00

By: Emily Paquette

Despite the chaos that seems to control my daily life lately, there isn’t a day that goes by where I don’t think about Bryant. Some days it’s a passing thought; something that reminds me of him or something he’d do. Other days I find myself sitting in thought, either basking in memories or trying to hold back tears of what life might be like if he was still here with us.

I don’t think I have an early memory of Bryant in particular. From what I remember of being very young, I remember Bryant being just like me. I remember us having fun, laughing, exchanging in typical sibling rivalry now and again. I feel like that never really changed either. I remember being in elementary school and still never seeing him as disabled. I mean, I knew he was in a wheelchair, I knew he got sick a lot, I knew he didn’t eat food like everyone else, but despite all of that I can honestly say that’s not how I defined him. He is my brother, and that’s how I defined him.

The only times the disabilities shined through for me was when he was really sick. Sometimes even if I felt like he might get really sick. I remember going through old diary entries and one was from a trip we took up north. I was probably 11 or so, maybe a little older, but I wrote that he was sitting next to me in the van coughing, and it made me nervous. Not nervous as in uncomfortable, but just nervous that something bad would happen. I don’t think I ever thought about him dying, since he was such a huge, solidified part of my life, but I do think I understood something bad could happen. Like the hospitalizations that I could see draining my parents, and could sometimes feel draining me.

Sometimes I liked being at the hospital. I knew being there meant Bryant was either sick or there for an appointment dealing with his health, but I think because I had grown up around it, my parents came up with ways to make it less scary. Being at Dartmouth in Lebanon, was fun because of the pizza we got, and then the soft serve ice cream was always the highlight. Sometimes we’d go into the gift shop, which to this day I can almost perfectly navigate and imagine in my head, and get something like a stuffed animal or candy.

Sometimes I remember catching myself looking forward to the Dartmouth trips, and guilt would wash over me. Like I said, I knew what those visits meant for Bryant and my parents, but looking back now, I think that it’s a good thing. My parents were able to show me that those visits were to help Bryant, but they didn’t have to be depressing and like a chore. That helped me look past his disabilities throughout his life like I said before. Everything always seemed normal. Not his or her normal maybe, but my family’s normal.

As I got older, into middle school and high school, my relationship with Bryant shifted. Same with my family in general. I think that’s what hurts the most when I have those days where I just think of past memories or if he was still alive. I regret not being around more, or spending more time with him on Youtube or watching his movies. What had I been so busy with? Stupid Twilight stuff? Friends who might not be around tomorrow if something better comes their way? I didn’t know he was going to die. I never thought there’d be a day where I’d be sitting in his room, looking at his picture, being so afraid of losing memories of him. Everyday I get farther away from the time when he was alive. That’s what scares me so much. I’m scared I’ll not forget him, but the memories won’t be as vivid. I wish I had made more, I wish I had at least had time to make more. Why did he have to die when I was busy being a stupid teenager? I still am in that state though, of being busy, distancing myself unconsciously from family to make my own life. So, then I think would things have changed? Would I have gotten farther away from him the older I got? Making his passing even worse and my soul full of even more regrets and guilt.

That’s the problem with death I guess. There never seems to be enough time with the person who passes. And I tell myself that, that I loved him, and I always will, and that the times we did share were amazing and meaningful. I guess it’s never enough though. Not enough to get rid of the days where I get lost in my mind and feel overwhelmed with grief.

I could write forever about memories and experiences with Bryant, which makes me feel better. Looking at pictures or watching home movies temporarily relieves the guilt and frustrations I think. I feel like I can almost transport myself back mentally to whatever picture or video I’m looking at. It’s almost like a type of therapy for me. I can let go of the negative emotions and relive those moments for awhile.

Unfortunately reality always kicks back in, and I find myself constantly analyzing my life. And I kick myself often for letting certain people or things drag me down when I remember how much Bryant impacted my life and views. I wish I could be as strong as him, or I could live life how he did. I always say I try to in papers I write about him, but do I really? No. I feel like I am too weak of a person to be as strong and amazing as he was. I feel like a disappointment a lot of the time I think. I try and do well in school, try and act or seem independent with money and work, but I feel like it’s never enough. Not for me or my parents. It’s like I’m stunted in a permanent teenage state of mind. I want to rise above it and reach that level Bryant was at, but it’s always out of reach.

I miss Bryant everyday, for more reasons than I get describe or begin to. I think I’m still in the early stages of grieving, and a lot of things have yet to even begin to be resolved. I hope someday I can accept everything and move forward with him still with me.

Bryant Paquette

2011-11-05T11:58:00.000-04:00

Memories ...
I went by the Moore Center to pick up Emily's check yesterday. You would be so proud of her and what she's doing. She has so much empathy and caring ~ they love her there. So as I was picking up the check, the woman says to me "Is that you" and points to the picture of you and I which hangs in the Moore Center reception area. And I said "yes". It's such a great picture, you and me on the ramp. It brings back so many memories and I am so thrilled that it's up at the Moore Center. Other people have commented on it before, when they visit the Moore Center it's one of the first things they see :)

Emily is in the process of doing a new slide show with new pictures (well ones that haven't been scanned into the computer yet). It's going to be set to the Muppet Movie's new soundtrack, which is mostly re-do's of all the 'old' songs that you loved so much. Like Rainbow Connection.

Which brings me to other memories which are not as easy or happy. We went to the Burlington Mall last night. I remember the first time we went there with you. We were so excited because we had found out that there was a Rainforest Cafe there and you loved the one in Disney so we were just so thrilled to go!   And we used to go and meet our friends from RI there and you would love to see the fish in those big tanks and watch the animatronics.

This time we went for Liam. He wanted to get another Lego set and he likes the Lego Store. And we like the Cheesecake Factory now.   We walked around the Mall and though unsaid, your father and I did not even mention the Rainforest Cafe. We can precariously close to it; but didn't look at it. I can't do it. I know it should be "happy times" because the memories are just so happy but for some reason it's not, it's depressing and aggravating because it's just so unfair that you weren't there with us.

Emily wasn't either. She was on her way to the Cape with Eric.   They were going to try and meet us but it didn't work out. And that reminded me of the time you were so little and so sick and you were at Floating Hospital in Boston and for some reason we went to the Cape ... I don't know why and it made me mad to think that we had left you, even for a short while alone.   We had stopped at the hospital on the way and then again on the way back and for some bizarre reason I cannot access the memory except for those details. I know you were very sick at the time but I am finding that some of these memories are 'locked'. Probably for good reason. I try not to dwell on them because it just makes it worse .... it's so unfair that you had to go through being sick and all those surgeries and hospitalizations.

Which brings me back to the Moore Center picture. Despite that rocky and rough beginning, you chose to live and fight and you chose to try and make a difference in advocating and teaching people about life.   I was so busy yesterday, doing so much stuff, and then Emily texted me and asked if I could get her check.   It's a hassle, Liam was out of school and with me and it's tough getting in and out of that parking lot. But I did it and now I realize it was a good thing, probably saved me a major meltdown to see you in the office, showing what you became and what you did with your life.

It's baby steps Bryant. And each day, I can be up and down a thousand times. It's so hard to not have you here that at times it's actually debilitating physically and emotionally. And then there are the moments when you just shine through all of it. Thank you for that.   I miss you so much ~ but yesterday and days like that show me you are still here, guiding and helping me.

Love you, Mommy xo xo

Snowtober & Epiphanies

2011-11-02T20:05:00.000-04:00

It's November - we have snow on the ground ... had a Halloween Storm a Nor'Easter blow on through. Two feet of snow! We lost power for a day or so, but thanks to you, we had the generator and it worked beautifully.   I am amazed to think of all the ways you continue to touch us Bryant, all the things you taught us. I am in the process of making plans to be away during the awful time in March when you left us physically. We are hoping to go to Disney for a bit and then head to the Keys. A friend has generously offered us the use of her home and I think it will be so great to go there, knowing how much you loved the sun and the beach. And, as a bonus, I will get to meet this amazing person. She has a daughter who is like you and I can't wait to meet them. I think it will be good for me to meet these amazing people in person. I am also hoping to see some other friends in Florida who I recently met through the CF organization. As one of them put it, the most amazing group of women I NEVER wanted to meet. But I did. That's like a lot of things Bryant. I never would have wanted, but they happened, and I did. Of course, I was always the better for it, especially when it came to you and the life lessons. But now that you're not here physically, it's just so difficult and then come the moments, almost frozen in time, where I see you and realize you are still here - in spirit. The issue is that they go by so fast, and I do wish I could "freeze" them, but they slip by and I just have to wait for another one.

Lately, Emily has been busy making a new slide show so we've been going through the albums.   Just so amazing to see you so full of life. The other thing though, is to see myself so full of life and this family so full of life. Now it seems, I am just a shadow or shell of who I was. It's kind of freaking me out now; realizing we are heading towards 3 years and it's just so painful.   While looking through the pictures, obviously we are trying to go in order. So first is the arrival of Emily and then Julia and finally Liam and you have that look in your eyes, like "ARE YOU FREAKING NUTS" another kid? And I told Emily last night, you know, Bryant hated crying. So it seems so sad that is what I do now.

And then looking at myself in those albums, with you and with your siblings, so full of life so full of promise, refusing to give up, refusing to ever take "NO" for an answer and just living life with you on full throttle. Now I guess we've slowed to a crawl and I think it's a pretty darn good day if I can get out of bed sometimes. Then there's a flash of the 'old' me and I guess last night was one of those epiphany nights. I slept with your pictures all around me in the bed. As if maybe you could breathe life back into my weary soul and spirit. I feel selfish because I know I had 20 years with you; and I should be thankful for that, not bitter and angry because you are gone. That's why I think this Florida thing will be helpful. It's not running away; I know that never works. It's more like I am honoring your life by understanding that living is what you want and what you taught me. The vision of myself in those photos, with you and Emily and Julia and Liam and your father; the amazing things we accomplished, it's like they are just vapors now.   So the question is, will I allow that?   Should I allow that? Can I even control that?

The answer is yes and no. I realize now there are bad days when it's just gonna suck. But I am going to try and live up to the pictures and give it a go, for you Bryant and for your siblings, where you spirit shines every day.   It's interesting, because you were my first and you welcomed the other ones as they came. But you had rules and conditions. No crying. Just laughing and fun. And you introduced them to your games and your videos and your amazing sense of humor. And they introduced you to their things. Like Emily holding the wand of the bubbles over your trach so you could blow bubbles or pulling you around the house (and then you pulling her using your wheelchair). And loving them, loving us. So in these little windows of time, when I see you clearly, I grasp them and try and hold on, futile of course. The only real way to hold on to you is to live the life you wanted me to live. Stay tuned Bryant. I will try and live by your rules.

xo xo Mommy :)

Bryant's Scholarship

2011-10-26T18:37:00.000-04:00

Bryant's Scholarship! So we have decided to give a scholarship in Bryant's Memory to a Senior at GHS. It is exciting because I think Bryant would be very excited about this. We are hoping to focus on those who love music / theatre, since these were HUGE for Bryant.

We are hoping people might donate $5 to the cause. They can send checks to: The Bryant Paquette Memorial Fund, c/o TD Bank, 2 High Street, New Boston, NH 03070. I think it's a wonderful legacy for Bryant and his life.

I have created a page on facebook ~In Memory of Bryant David Paquette 2/1/89-3/21/09 - it's a closed group but it would be great to see you there! Join up!

Thank you everyone for all your support :) Love you Bryant :)

xo xo Mommy

Dragon Mom: To one from One

2011-10-19T15:25:00.000-04:00

RE: Bryant Paquette 2/1/89to 3/21/09

In response to the NOTE FROM A DRAGON MOM:

My note TO a Dragon Mom from one who has been there.

I know you. I have been in your shoes. Myson’s name, Bryant, means “High and Noble” . Your story resonates with me because I lived itfor 20 years. We don’t have the exact same storythough. When I was pregnant with my son, in 1989, there was nointerent, there were no routine sonograms and as a young mother, I was told myobsession with there being “something wrong” was only going to make memiserable for the pregnancy. I kept saying “something is not right” butback in the “good old days” there was no way to confirm it. And I dind’tmake any risk group, so at around 36 weeks, when movement stopped, I was toldto come to the ER, they were sure the baby was ‘just sleeping’ and reluctantlyagreed to do a non-stress test. I had been told at my previous OBappointment that the baby would be around 10 pounds, I was so big.

At the ER, the non-stress revealed a “flat heart rate” notflat line, but flat, no fluctuations. They gave me apple sauce to wakethe baby and ice cream, but to no avail. Finally, an ultrasound was done,but only after being able to locate one because the hospital basically shutdown around 5:00. So around midnight I learned that the baby wouldnot be 10 pounds, I was loaded with fluid and the baby could die at anytime. But, they would wait until first thing in the a.m. to do thec-section. The doctor quipped “I haven’t lost one yet”.

Promptly at 8:00 a.m. I was ready for surgery and thec-section performed. As soon as I heard the splashing sounds, whichseemed to go on forever because of the polyhydraminosis, I was told the babywas “grossly deformed” and that “we could have other children because we wereyoung”. Convinced the baby was already dead, I told my husband notto look. There was no crying, no noise and the baby was usheredout. Then I was told it was a trisomy (later that was changed to a translocation). Incompatible with life.

A nurse appeared, like an angel almost, and told us we hadto see the baby that we owed him that. I asked if he wasalive. I was told he was. So I was wheeled flat on my back into thenursery area. And that’s when this Dragon Mom was born. He was , infact alive, and seemed annoyed at the hat on his head and the needles in hisarms. He fought them. So, I fought. They transferred him to ahigher level nursery about 2 hours away. I demanded to go with him. Theyprovided me with an ambulance ride.

Bryant spent 4 months in the NICU, but after genetic testingit was called a ‘de novo’ translocation of three chromosomes with fourbreakpoints. He was on life support and would die within a short amountof time. His brain had no corpus collosum and the left and righthemispheres displayed no regular formation. I was told it looked like someonetook the gray and white matter and threw it up in the air, and thus formedBryant’s brain.

He had problems head to toe from the brain issue, to a majorcraniofacial issue (which took 18 hours in surgery to repair plus additionalfollow ups) down to bi-lateral club feet. He had more than 25 majoroperations, had a tracheostomy and a g-tube. On paper, he was a mess. Butthe dire predictions, that he would die within a year or if he did live hewould have “no purposeful movement” did not come true.

So that is where our story divides. Bryant wasn’tsupposed to do anything. He had no actual diagnosis /syndrome. It was de novo (meaning we were not carriers). Wecould have other children. (And we did, three others.) But because of the no diagnosis, all bets were off. Bryant did liveand did have purposeful movement. He was a typical mischevious little boywith a trach, g-tube and in a wheelchair but he teased his sister nonetheless;she helped him blow bubbles by holding the wand next to his trach. She pulled him around the house in a little plastic thing; hereturned the favor by pulling her usinig his power wheelchair.

But we were never far from the knowledge that he could getsick and die. On New Years Eve, 1998, he suddenly felt warm. Withinan hour, he was at the ER, in full status (non-stop seizure) for over twohours. His recal temperature was 107, which normally isn’t compatiblewith life. It was chicken pox. They had to drill into hisshins because they could not get a regular IV in. We were one with the ER team, helping bag him, helping cool him and watching this horrific scene unfold. But as a seasoned Dragon Mom, I was thankful to be with him, by his side in the ER. Once he was somewhatstabilized, the helicopoter came and took him to another hospital. We were told this was probably ‘it’.

So here comes the ups and downs of caring for someone, whofor any reason, at any time, can become sick and die. And having suchmedical fragility, we were responsible for the moment to moment things thatkept him alive, like managing his airway and feeding him through histube. I fired most of his nurses; none of them could take care of himlike I could. I fought with IEP teams. Due Process. All ofit. Because he was worth it. Life on the edge, my cortisol stuck inthe permanent ‘on’ position. Watching him breathe to be sure he wasn’tstarting to get sick, checking his heart rate, SA02 rate.

But with all that, Bryant’s spirit was there to teach ussomething far more valuable. Life is brief and you can’t squanderit. He lived out loud on full speed. His personality drew people tohim. He used sign language to communicate, and a Dynavox lateron. He peeled out in his wheelchair and caused all kinds of troublewith his infectious personality and mischevious ways.

All we want for our children is to grow up and behappy. To make a difference and maybe, if we’re lucky, they will leavethis World a better place. No one wants to see their child suffer or haveless than what we had. But for Bryant, he carved out his own way. He was his own person with his own agenda and goals. I was just along for themost glorious ride of my life.

Bryant passed away March 21, 2009. Nowarning. We knew his life was fragile, but he wasn’t ‘sick’ – infact, he had one of his best days that Friday. I was at an IEP meetingfor a few hours trying to get him a new mount for his new Dynavox which werecoming and a brand new MAC. I was a lame duck, he was almost 21 and thefighting had not been as intense that last year (his senior year).

I woke up to my hubsand’s screams. He had slept byBryant’s side for Bryant’s entire 20 years. He had been up at 4:30to shut the g-tube pump off and went back to sleep to snooze. At around6:00 a.m. Dave got up and found Bryant. I knew from thescream. I ran downstairs and we began CPR and called 911 simultaneouslybut I was pretty sure. Once the EMT’s arrived, even though the CPR wasworking (no pulse returned on its own but the compressions registered on theSA02 monitor and was showing an SA02 of 100) ~ when the Medics got the defib onand it advised “no shock” – I knew. Still, every med was dropped, everyeffort tried for the 20 minute ride to the hospital, compressions all the wayas they tried frantically to save him.

Bryant looked peaceful. His eyes were clear, he lookedlike he was sleeping. They again had to drill into his shins for an IVand when they “called it” at the hospital, I demanded everything be removed,all the tubes, wires, IV’s, etc. I told him “Bryant you are free” flyfree.

It’s been 2.5 years and the worst thing imaginablehappened. He died. I never cared about those ‘dreams’ people havefor their typical kids. I never grieved Bryant’s condition when he wasborn because we were thrown into the fight of our lives from Day 1 and that wasfor him to live. I don’t know why. People ask how Iknew. In the face of so many professionals telling me to do a DNR, hewouldn’t live, he wouldn’t do anything, he’d be a vegetable …. Let him go ,have other kids, live your life … why didn’t that seem logical to me? Idon’t know, somehow inside of me, I always felt that he would live and he wouldbe okay.

Having a child who could realistically die at any moment,being so medically fragile may seem awful. And that part was nofun. But I didn’t live it that way. We lived it like every day wasthis enormous blessing to have life; he wasn’t supposed to have hadany. So here was another day of life, 20+ glorious years oflove. Bryant was the leader, always. He showed us what life was andhow it should be lived. He didn’t have time for the people who stared athim or labeled him as this or that. He was a free spirit, a soul thatknew what he was supposed to do. He survived insurmountable odds,countless hospitalizations and surgeries. Along the way, we met so manyincredible people and Bryant changed lives and laws. He advocated forothers and made me see that life is about living, in the day, because in theend that’s all we have. And while he only got 20 years, that was 20 morethan he was ‘supposed to’. He didn’t waste time either. Whether we were at Disney World or advocating in Washington, DC or at our StateLevel or just hanging out watching a movie, Bryant did it with a leadership andlove which I have never nor will ever see again.

Bryant carried us.

Dreaming of happy times :)

2011-10-17T10:38:00.000-04:00

So Bryant! I had another dream last night about you and Emily and me! Daddy was at work and I decided to take his motorcycle out with you and Emily. You were a bit older in the dream but Emily was still little. Anyway, we all fit on the bike and we rode and rode and rode. It was beautiful out and we were having a grand time but then we got lost and ended up on this dirt road. We asked directions and some guy told us to keep going but that we were really far ~ so we kept going and then we came to this 'cliff' type of thing. At this point, even though we had regular clothes on, there was snow on the 'cliff' / hill. No snow on the ground though when we were riding the Bike. So, we got the idea to go sledding / sliding. We were having a great time going up and down the hill and it was just so much fun. Nothing fazed us, we were just up for the moment and going with everything, and having such fun! Then I called Daddy and told him I took the Bike out and he should meet us because it was so much fun. He came and we all were going up and down the hill, sliding. Then it started to get dark, and I knew it was time to go home and I was incredibly sad that it was over but we all hopped on the Bike and headed home. Then I woke up. (Daddy took the truck, it was me, you and Emily on the motorcycle).

Strange dreams, but this one, except at the end feeling sad, it was more euphoric and you were just you, the way I remember you, except not in the wheelchair and we were having sooooo much fun! I miss you pal, every moment of every day, 24/7. And I know Emily does too. xo xo Mommy

Rainbow :)

2011-10-16T13:07:00.001-04:00

Dreaming of Bryant ~ Intense Dream

2011-10-15T11:07:00.000-04:00

Another Dream:

So Bryant I had another dream. This one was quite long and involved. I am still wondering about it. It was very real but more like a riddle than my past ones. In the dream, Daddy and I had gone away for awhile and you were staying with someone (I will omit names). Anyway, when we came back, the person said you had died and that it was for the best because you were so tired and everything. Your father seemed to be in agreement with this but for me, I was devastated in the dream. Initially, I thought I would be okay, though, understanding what happened. But as the dream progressed, I became more and more agitated and upset, wishing I could go back in time and undo it. Your father, however, seemed to be able to go forward. I kept searching for answers (praying) though and would not stop asking (prayers) and was crying a lot. Finally, in prayer, I received a 'riddle' and was told to go to a house and "search thoroughly" for a cake. I would not be able to have it though, it would be too large. (this reminds me of the saying "have your cake and eat it too"). I searched the house and found the "cake" which was supposed to represent you. However, I was told in the riddle that I would not be able to have it "yet" and that it was going away for awhile. However, because I had 'searched thoroughly' I would eventually receive the reward. It was a double-edged sword though, which is why I was crying, because I could "see" you but couldn't bring you with me. Someone came in and told us we had to go (daddy was with me) because a great earthquake was coming and the house would go away. However, it was only going away 'temporarily' and although the cake was much too large for me to take with me, it would be safe and eventually I would have it. Leaving that 'house' was the worst thing. I wanted to stay so badly but was forced to leave. And I could see as I left, the house going away in the earthquake. Once I got safely to land (we had to take a boat for some odd reason) - you would think an earthquake would effect everyone ... but anyway, it was a dream after all .... once I got to land again, I was devastated and wanted to go back, just to see the 'cake'. But I knew I could not until whenever, which was not disclosed in the riddle. I was told that although the gift / cake was too large for me to take, in the end, the reward would be similar to the devastation in size - meaning the reward would be large but in a good way, and I would be able to receive it.

So I woke up, very intense dream, very long and I am like drained. I remember in the dream feeling that we failed you, that because we were 'gone away' we were responsible for your death and I felt like I therefore should not go on. Daddy felt differently and it was causing a rift in the relationship.

So there you have it.

Love and Miss you, xo xo,

Mommy

2011-09-30T14:09:00.000-04:00

Well Bryant, it's Fall. Probably your favorite season. Emily and I put together the above collage / picture of you and some other incredible people who were gone from this physical world much too soon.

I have had a couple dreams about you. One was really good. In it, you were racing around in your wheelchair, free as a bird, and I was chasing after you. You always delighted in doing that to me, making me run after you to make sure you were okay and you'd just laugh and let the wind go through your hair. That's how the dream was. You had a HUGE smile on your face and you'd slow down just enough to let me catch up to you so I could kiss your head and then you'd be off again. I wish it was real. I mean it was real, we did do that, you loved flying around in that chair. You made sure life never slowed you down. Wish I could do the same. I feel that I am just adrift ~ not really chasing anything anymore. Just kinda stuck. As the poem says above, some days I feel like I am moving forward, but generally the backwards day seem to outnumber, or at least, gang up on me and send me in such a tailspin.

The other dream was more complicated. In it, "they" whoever that is, called to tell me you had died. I went to see you and the "nurse" and were crying, saying "WHY BRYANT" because you were so happy and full of life. Grammy was in the dream and she was trying to reason with me, saying odd things, maybe because she didn't want to see the incredible hurt and pain. Then, Memere appeared and said you were okay and you would be together. You know, I can barely get through typing this without crying and it is emotionally draining to even think about it. But in the dream, even though I was crying, it seemed that I was accepting it and then with Memere saying to me that you were okay, well it seemed calming. So it started off as a nightmare, me running to the hospital and ended up more of a calming feeling.

Emily made a gorgeous collage of you and Disney with her when we used to go. I wonder if I will ever make it back there. Anyway, the collage / pic is great and your smile is just incredible. You always were happy. I miss that Bryant. I miss your being here and it seems like everything is just in pieces. I try to pick them up, but they crumble. It's like this past weekend, I went to the Beach alone and looked for sand dollars. I found one almost right away and picked it up. Then I saw another and went to pick it up but it just crumbled in my hand. And that's what it's like for me. I go to pick up the pieces and sometimes, I can get one but the majority are just crumbling more ... it's not a lot of fun.

And fun, that's what you were. Your sister has decided to be a psych major. I think you would approve. I know she misses you too and I am so angry that we have to go through this as a family. Julia is pretty good at the clarinet and has decided to take up the Cello. I can only imagine how you would have loved the music :) And Liam. He's just a ball of energy, like you. He's starting Flag Football on Sunday. It's amazing to me, because he's just such a social butterfly like you. He's just always looking to do something and I just wish I could muster up the energy I had with you. I need help with that.

So I asked God for wisdom. Like Solomon. Not that I am going to get what Solomon had, that's for sure, but hey, it doesn't hurt to ask. I thought of all the things I would wish for (besides having you back here) and wisdom is what I need. I need to be able to know or see what to do next. When you were here with me, it was always crystal clear and now I am just stumbling from one day to the next. Sucks. I will tell you, though, I have found some solace, grace and repose with my other Angel Moms. It's safe with them and that has been a tremendous help.

So that's it for now Buggy. I love you more than words could ever say and I hurt more than words could ever say. Ever. There are no words for it.

xo xo Mommmy

2011-09-06T09:52:00.000-04:00

DAMAGED.....

Hey Bryant!

So much going on. I know I haven't blogged in awhile.   There are a few reasons. Okay, so let's catch up.   Sadly, your cousin and friend, Chet, died in August. It was sudden and awful. He was always your good friend, you and he telling jokes to one another or sending a little smirk each other's way as if to say "Yeah I know what you're thinking!". Friends like Chet & Kath are hard to find. It was extraordinary difficult for me to attend the Service but I knew I had to go for Chet and Kath & Erin. They are hurting and unfortunately I know all too well the sadness and intense grief.   However, the comfort eventually comes in a life-well lived with few regrets. Not a cure, certainly not at all, but some comfort and peace. That's what gets me through most days.

I have had a couple of extremely difficult days. I have felt so damaged, almost too much so to go on.   I have become increasingly angry at the fact that you are gone. So I have had to march myself up to bed and go to sleep. I think what has happened to you and how you're not with us and there are days it so overwhelming I don't think I can go on. Now, I know, you would be very, very disappointed. Funny how fast lessons are un-learned. Your incredible life and spirit and willingness to try anything new, your profound ability to read people and communicate, your almost endless patience and love ~ and most of all your honest and true spirit which glowed almost. You had a 'thing' about you which attracted people to you. Like a shining Star. Flashing that smile ~ well who wouldn't miss having that in their life.

Today is the first day of school for Julia and Liam. We went school shopping yesterday. Grammy is here until tonight because of the Funeral for Chet.   So she has been here a week and we have talked about you a lot. Emily and I are already back in school, can you believe your sister is a JUNIOR in COLLEGE? And guess what?! She finally declared a major - Psychology. Fits her perfectly! I have decided to pursue business.

I have been able to see Hana a lot over the Summer. We talk about you as well quite a bit. She said she will never meet another Bryant <3   How true. You are a one-of-a-kind Mister! And we miss you.

It's Quiet in the House today. The kids went off to school and Emily is at her class. Grammy is getting ready so we can take a ride to see Uncle David. We went to your cousin's football game yesterday, he's the Quarterback! We were cheering and screaming so loud. You would have loved that!

I talked to Grammy a lot about how it would have been good for me to have gone to College straight out of high school - but I guess my school was really the School of Bryant for 20+ years. And I would not trade that for anything. You know there's a song, "Timing is Everything" and it reminds me so much of you and what life would have been like without you or without knowing a Spirit Guide like you. I suppose my incredible misery at your Loss sums it up best.

So onward I go. Yet, another song breaks through quite a bit. This one is the one which would best describe the past few weeks particularly the lyrics from "Broken" by LifeHouse:

The broken clock is a comfort, it helps me sleep tonight
Maybe it can stop tomorrow from stealing all my time
I am here still waiting though i still have my doubts
I am damaged at best, like you've already figured out

I'm falling apart, I'm barely breathing
With a broken heart that's still beating
In the pain, there is healing
In your name I find meaning
So I'm holdin' on, I'm holdin' on, I'm holdin' on
I'm barely holdin' on to you

The broken locks were a warning you got inside my head
I tried my best to be guarded, I'm an open book instead
I still see your reflection inside of my eyes
That are looking for a purpose, they're still looking for life

I'm hangin' on another day
Just to see what you throw my way
And I'm hanging on to the words you say
You said that I will be OK

The broken lights on the freeway left me here alone
I may have lost my way now, haven't forgotten my way home

-----------------------------------------------------------------------------------------------------------------
So hopefully the next few weeks won't be as bad. I will have more time alone at home though when I'm not in class or at work. I am going to have Julia home but she is self-directed as you know. She has mastered the Clarinet and now moved on to the Cello. And Emily is busy with school and her life, which is the way it should be. All these things are good things. Liam had a soccer camp and is going to do flag football. All good things. But I am barely breathing Bryant, a lot of the time. Falling apart. Feeling weak and almost broken and shattered. Perhaps it is part of the healing phase - although I do believe I am permanently stuck in the Anger phase. Damaged, for sure. Healing?   Kind of. And definitely Bryant, hanging on, just to see what you'll throw my way. In your name I do find meaning. I love you Bryant and miss you so much. We all do.

Love you ~
Mommy xo xo

No Ordinary Hero

2011-07-26T21:40:00.000-04:00

Bryant's Necklace

2011-07-24T23:37:00.000-04:00

I chose this picture for my necklace charm because it is Bryant 100%. I remember this day, clear as a bell. At Disney World I asked him, "Hey are you having fun" or something to that effect and he flashed that incredible smile. That "I LOVE LIFE" smile. This is my most precious photo of Bryant because it was taken randomly, but it speaks volumes as to his love of life and will to live. I miss you Bryant. <3 You are in my heart until we meet again.

xo xo Mommy

Compassionate Friends

2011-07-24T23:33:00.000-04:00

Compassionate Friends.   Seems like a description of how we would describe our best friends. We assume they will be 'compassionate'. Yet, there are times when things become too painful and too hard ~ and you find yourself drowning almost. No safe place, no one to catch you when you fall and no one to understand that most horrifying life-altering event of losing a child.    So it can be lonely and depressing; your guard it up; no one will get through it. Sentenced now to a life of intense grief. You get to hear all the platitudes known to man (and some people come up with on the fly) ~ none of which help at all. You want to scream at the top of your lungs, and sometimes you do. And then slowly, but surely, many 'friends' disappear - you've taken too long. You should be over this. He's in a better place. God will make him whole. You have other kids. You must go on.

None of that helps, of course. Moving forward is a choice and it's hard work. The fact that I have three incredible "other" children (which is pointed out to me frequently) is my life lline. I love them, they teach and they comfort, but I also know they hurt too. They lost their brother. I am fortunate to have a loving husband who supports me ~ but he grieves as well. And together, our family is beginning to make a new life, a different life, probably loving each other a little more and knowing how honored we have been to have known such an incredible spirit. He makes us better. It's a lesson we could have done without, quite frankly though. I'd trade places with him in a heartbeat. It's not supposed to go this way. But it did.

So the conscious choice is made, to 'go on' - but never forgetting. He's in each of us, just as he took a little of us with him - a trade off if you will.

I have had the enormous and most incredible experience too. I found Compassionate Friends. Slowly, out of my shell, I put myself out there and joined the group on-line. A few friend requests came in and we got to know each other, on-line. Still guarded but more and more ready to put our hearts on the line and open up.

I attended the National Convention of the Compassionate Friends. How it all came together is really nothing short of spectacular. My registration got messed up but one of those on-line friend of a friend had a spare room (in a hotel booked solid). I made that leap of faith and I went. I met the MOST amazing women. We laughed, we cried, we hugged and we bonded. I found acceptance, understanding and safety.

They say misery loves company. Perhaps that is somewhat true. But throughout the tears and the misery, we are together putting one foot in front of the other and finding some peace and hope. We never tire of hearing the stories, we ask questions and listen intently.   I was also honored to be asked to attend a special ceremony, one of my new friend's daughter's tragic anniversary fell on one of the days of the convention. Together we wept and prayed.

There is safety in numbers they say. That is true as well. We did our Walk to Remember, Thousands walking to Remember. But really, we all know, we don't have to have a "walk" to remember, it's with us each and every waking hour of each and every day 24/7.

Together, my new group of friends discuss the platitudes and the oftentimes humor in crazy things. Without naming names I will say, I shall never forget this "Aunt ____ died? You need a ride".   It's an inside joke, something that made us laugh and for a moment in time, we were together in our grief, yet making our progress through it. Some sayings are more than platitudes. Love, Live, Laugh. Without that, what is life? Certainly, the pain we feel is so intense BECAUSE we have embraced that, our children taught us that and they continue to teach us.

I will say that these women have helped me more than I had ever imagined. We are part of a unique club that no one would ever want to be a part of. Ever. Never ever ever. I think of Job - he lost 10 children in one whack.   And Job attracted the attention of 'comforters'. Those are the ones who speak the platitudes. They are described in the Bible as "false companions" and are rebuked by God himself.

I think of King David. Loved by God, chosen by God. King David lost an infant son. He mourned. He had "other children".   And then it happened, his own son, Absalom tries to revolt against his Father King David. Through it all, David loved his son, despite the son's efforts to harm him. In the end, Absalom is killed. The news is delivered to the King and he says "My son Absalom, my son, my son, Absalom! O that I might have died, I myself, instead of you, Absalom my son, my son." The account goes on to say "The king is weeping and he carries on mourning over Absalom. The King has felt hurt over his son, and the King himself covered up his face and the King continued crying out with a loud voice: My son Absalom! Absalom my son, my son".

The Club. Too many are in it. None want to be. All feel as King David did, O that I might have died, I myself instead of you.   In fact, part of us does die. And then we make a conscious decision to go forward, through grief, with grief. It doesn't leave us, it's patient, it waits for us, catches us and like a gut punch, it sneaks up on us. Yet, this Club provides the safety and the comfort; the understanding and acceptance - we all grieve differently but yet, at the end of the day, we grieve and we hurt.   We don't want that to be our common bond, but it is. So we take the life lessons from our children who have died and share the stories ~ and somehow, day by day, we heal in tiny little increments - never fully, but enough to go forward and honor their lives.

I am amazed at my "other children" - that's how they are referred to by people who don't know what else to say (here is a tip, don't say anything. Just a hug or a smile will do, you can't fix it, don't try). Anyway, they are incredible. They make me smile and give me hope. I love them more than life itself. I am honored to be their mother, and for them, I will fight on. And for Bryant, he wouldn't have it any other way :)

I wrote a poem, just off the cuff, so it's raw and rough. But this is how I feel. When Bryant died, I took his pillow to bed with me the first night. I could smell his hair. And it occurred to me, this could all be a nightmare. If I wake in the morning and the pillow is gone ~ I will REJOICE!!!!!   Well here's the poem.

Bryant's Pillow

I sleep with your pillow

Placed beneath my head

In hopes upon awakening

I’ll find that you’re not dead.

My prayer each night is that

I’ll find it was a dream,

No pillow to be found,

No reason for my screams.

Yet each morning repeats itself,

The pillow still remains,

The nightmare still continues

With never-ending pain.

I’ve heard all of the platitudes

From those who do not know

Their words are empty and hollow

It’s not time for me to ‘let go’.

They tell me you are whole

A better place they say

Or that it was your time to go

So God took you away.

And then there are the friends

Who cannot play along,

They cannot stand to see my pain

So instead they must move on.

Others are inspired ,

Or at least that’s what they say;

I am so strong and courageous,

As I face another day.

And still we have the obvious,

And the wisdom they bestow,

“you have three other children”

As if I didn’t know.

But here’s the situation,

The real deal as we say,

There are no words to heal the pain

Nor words to take it away

My agony is living life without you,

The pain won’t go away

And your sisters and your brothers

Miss you more and more each day.

In the deepest darkest hours,

Your beauty is revealed,

And it is within those times,

Parts of me are healed.

The laughter from your brother,

The light in your sisters’ eyes,

Remind me of the love of life

You made us realize.

You lived your life with gusto,

You loved with all your heart,

Some of that sustains me,

While we must be apart.

I know someday we will again rejoice,

We know not where or when,

The pain will finally disappear

When I hold you once again.

So those of you who choose to stay,

Each time you speak his name

You help more than you know,

Yes, I’ll never be the same.

There is no word or phrase to heal

The wounds we now must bear,

That life is changed forever

And we don’t think it’s fair.

So please don’t tell me how it felt

When your father passed away

Or how you cried when Fido died

Because part of me died that day.

However, in the meantime,

The Pillow I still keep,

A part of you is with me,

as I drift off to sleep.

I will laugh and love and smile

For that is part of love,

And that is what you taught me

My spirit guide from above.

For Bryant - 2/1/89 - 3/21/09. Love & Miss you,

Mommy

Rainbows....

2011-06-26T17:20:00.000-04:00

More Summer Stufffffff & Rainbows

2011-06-26T17:17:00.000-04:00

Wow, it's been awhile since my last post. Of course I think of you constantly. What's new? Hmmm - let' see. Well Julia graduated from 6th Grade. You know how New Boston makes a big deal of it, which is good. The Awards Ceremony was like 3 hours and thankfully Julia won like 5 Awards so I wasn't completely bored silly. There was Patrick, he was in his wheelchair watching the whole thing and I marveled at how he sat through the whole thing (3 hours, did I mention that)? And I was thinking, sheesh, Bryant woulda been outta there by minute five. But then as I came around (to try and get better pictures of Julia) I saw Patrick had mounted on his chair a little mini dvd player. HAHHAAHHAHAHA! Yeah, you woulda liked that. So he wasn't really watching the Awards thing, he was watching his own movie stuff. Just like you used to do. So awesome. But it made me stop, again, in my tracks to realize that you are gone. I had those reminders. Even though it did make me smile because he reminded me of you and your tricks, I still was caught off-guard, a rush of emotions that I wasn't really happy to have at that moment.

As you know, most of my moments are that of intense anger and it just continues to grate. I miss you so much.   So anyway, after the Awards Ceremony, that night was the actual Graduation.   I saw Ashley there and I hugged her and told her I still have that pic of you and Bryant and you know what?   She told me that she has it too, in her room, framed. Again, caught off-guard but in a good way. For a moment I was transported back to those NBCS days of crazy fun and antics you and your friends would pull off. I always looked forward to those days, picking you up and hearing of your latest adventure. So happy memories....

So now - the real news. We traded the van. It was a surreal day. The night before was actually the worst. I thought I might actually have a break-down and need to be hospitalized. It was really bad. Those days come infrequently, but when they do, the grief is almost too much to bear.   It is physically exhausting and it is just as if I am drowning ....

Concurrently, I found a group of young guys in Indiana (high school) who have taken on the task of refurbishing wheelchairs for kids who otherwise couldn't afford them (power chairs). So I thought wow, I should donate Bryant's chair. It has been sitting here doing nothing and I finally found a place for it.   They are going to use it for someone who needs it. I am so happy for that because that wheelchair gave you so much freedom. Of course, I enlisted the aid of Jan, who was happy to help us get it shipped to them.   She was our greatest ally when you got your first chair. When we dropped it off, I was able to stay in conrol for the most part, thank goodness of my emotions. The guy who used to work on your chair came out and he got a little teary-eyed.   You guys used to pull pranks and stuff while he'd work on your chair and you'd tell jokes to him. Anyways, he is this big strong tatooe-d guy, pony tail and all and he was saying how much he remembers and how they all miss you being in there. They think of you all the time the staff said.   That's how you were and still are, such a beautiful wonderful spirit.

All kinds of other stuff has happened. Let's see, I went shooting for the first time in like 25 years. Emily was suppoesd to go with me but she was too busy with Eric in Disney, your favorite place. I am still nervous about going back there, but Emily did it and I think we will go in October. Anyhoooo..... one of Emily's friends answered my facebook invites to go with me and we had a blast (excuse my silly puns ...). It was a lot of fun. You'd be proud of me.

Then, our stupid rescue dog escaped. She ran off into the woods and never came back. I put an ad in the newspaper and called all the vets / rescue places and nadda, nothing. Finally, I printed up a picture and put it at Dodge's and within a day got a call. She was in the slammer in Francestown. haha. You would be so amused. She (the dog) met up with a porcupine during those five days.   While we were away in May, Nate watched the house for us. He has a hunting dog so he met beulah, etc. Anyway, I called him and was like HELP!!! So he came over and helped us get the quills out of the stupid dog. We talked about you and we laughed about your antics. Everyone misses you so much...

I had lunch with Christine and we talked about you. You are just everywhere Bryant. Everywhere. For that I am eternally grateful.   Life just seems to be in fast-forward a lot of the time. I have been looking into the "Superman Theory" and
Transcendentalism- which is a group of ideas in literature and philosophy that developed in the 1830s and 1840s as a protest against the general state of culture and society, and in particular, the state of intellectualism at Harvard University and the doctrine of the Unitarian church taught at Harvard Divinity School. Among the transcendentalists' core beliefs was the belief in an ideal spirituality that "transcends" the physical and empirical and is realized only through the individual's intuition, rather than through the doctrines of established religions."

This line:
So shall we come to look at the world with new eyes. It shall answer the endless inquiry of the intellect, — What is truth? and of the affections, — What is good? by yielding itself passive to the educated Will. ... Build, therefore, your own world. As fast as you conform your life to the pure idea in your mind, that will unfold its great proportions. A correspondent revolution in things will attend the influx of the spirit. (Ralph Waldo Emerson)

That just reminds me of life with you and how through you, through the Eternal Greatness of God and His Ultimate Wisdom, he allows a glimpse of perfection. The perfection of the Huamn Spirit and Soul. And that's what you are to me. Of course, having you here was much easier ~ now without you physically present it is impossible at times though I try. Day by day Bryant. I marvel at how strong you were. What courage and incredible strength you had. And how lucky I have been to be present for that. To see it.

Back to the Anger. So I miss it. I miss you. I miss everything about the life we had. And then, a glimpse, like the Rainbow, that yes, God is understanding the pain. King David lost his son; Job lost 10 of his children. None ever got "over" it. So I know, on a cognitive level all of this; but there are times like described above when it is just too much. I am grateful eternally as I said for the friendships you forged and how you did not leave me alone in that.

Summer is here, we will be frequenting the beach, which you loved soooooo much. Daddy had a Reunion yesterday with his side of the family and many never knew you. They only knew you were in a wheelchair. Sometimes people feel sorry for us and it is almost beyond comprehension to me because you were such a Gift. But, again, you have to be able to transcend to see it. To really grasp it. So, I told them about you. My audience enthralled to know all you did, all you accomplished. Feel sorry for us? For Bryant. Ha, that is quite amusing to me. I remember how that used to bug me and then I would recall you and your attitude towards it. You had no time for that, for the doubters ... you had time to live and you did it with the ferocity that is unmatched by most.

Emily is like that and she continues to amaze me. She loves you so much. She wears the pendant from you all the time. Julia talks about you and writes about you as well; and Liam, well he's still young and wonders when you will come home. He knows someday we'll see you again and he thinks literally at his age. I wish I could be like that somedays ....

And then I think of it, the Rainbows you bring and show and how brief they are but how beautiful and amazing they are, no matter how many you've seen. That's how your life is ... still.

Miss and Love you Always,
Mommy xo xo

Just found this on you tube!

2011-05-23T23:06:00.001-04:00

http://www.youtube.com/watch?v=bwdaL18q6Oo

Spring/Summer 2011

2011-05-18T21:02:00.000-04:00

Sunrise - St. Augustine Beach

I found a real sand dollar!!!!!

Well Spring has officially arrived, at least on the calendar. It's been rainy all week and we are in the middle of May. It reminds me of 2009 the year you left us; it was dismal the entire summer and it certainly matched my mood, that's for sure. The rain doesn't bother me that much; I know eventually it will get better and we'll have nicer days / weather. Kind of like life. Bitching & Moaning isn't gonna change it; you have to just accept it and try and make the best of it. There was a quote today in the paper and put it on my facebook status because it reminded me of you. It says:

To fear love is to fear life and those who fear life are already three parts dead". Bertrand Russell

Definitely how you lived your life, no fear.

So we went to the beach in Florida. We stayed in a condo right on the beach. You would have loved it. It was gorgeous to watch the waves and be in the sun, but there was a whipping wind that would come, probably to annoy Emily and her hair and it just made me smile; not because it messed up Emily's hair but because you loved the wind. You used to put your arms out to it and embrace it, almost. We also visited Spring Hill, which you know I refer to as Spring Hell, which defines our life there. It wasn't all bad as Grammy consistently points out, I mean we did get Disney passes and enjoyed visiting Disney as often as we could in the 10 months we lived there. 10 LLLOOONNNGGG HHHHOOTTTTTTT months. It's been cold and rainy here as I have already said; but it's also humid so you feel all yucky and stuff; remember, that's how it was in Spring Hill. Never a breeze, always hotter than hell, and the ground was brownish unless you were independently wealthy and also not afraid to get a 'ticket' for watering your lawn on 'off' days. Having a sprinkler system didn't help much when we were banned from watering and then on the days we could we ended up with a $300 water bill. No wonder everyone lets their lawns go brown.

Our lawn here in NH is now green and lush. Everything is green. Wet, but green. There is color again, almost like coming out of a black and white movie into color. The lilacs and the other early bloomers, tulips and apple tree flowers, etc. Daddy has been out doing lawn stuff and the area we made for you "Butterfly Alley" is sure to attract those beautiful creatures.

We got a dog. A rescue. She's cute. You would have liked her. I wish we had her when you were here, maybe we could have been alerted that something was wrong and we could have stopped the horrific event of you leaving us. Maybe not, someday we'll have the answer to it and it won't matter because when we have the answer we will be re-united - no more death and dying. Just love. God's Grace. But still, I try not to let those thoughts possess and haunt me; yet there are days when they do. I have no regret, except for that, I wish I could rewind the clock and be awake to save you.   Then my mind drifts into the other obvious line of thought ~ we all die and maybe you really were tired. That's what Dr. Spivack said. You were done. I will have to say you did more in 20 years than most people accomplish their entire lives and you continue to touch and inspire. So I guess that's where the trail ends ... and then my mind eventually recycles the whole thing until I end up with the same basic conclusion .... I miss you sooooo much.

I don't know Bryant how you did it. Always smiling, always gracious, so kind. It does make one wonder about miracles and the spirit and soul and how you seemed to just personify joy, love & perfection. You never hurt anyone you never hated, you always brought joy and smiles and happiness.   Even in awkward situations, your voice would be there, telling a joke to put someone at ease. That time you were so sick at Boston Children's and the maid came in to clean and you said "Ola" using your Spanish. She nearly jumped 10 feet! I remember that clear as day. She said "He knows Spanish". And I said "Yeah he knows some basic stuff mostly from Sesame Street".   And she brought all her friends in and you just said "Ola" and other stuff to them and they spoke back to you and I just watched in wonder.

It's hard for me Bryant not to hate and be bitter and angry. Some days it is just so incredibly frustrating and I am just so angry. So so so so angry. I hate that because it the nemesis of who you were and as I sit here typing this I can barely breathe, my chest is tight and I am just so mad so freaking angry that you had to leave. I know it's selfish and I know you did so much, taught so much, so why isn't that enough? Some days it is. Other days, like now, it's not.

You would be incredibly proud of Emily though. She's amazing. Thank God for Emily. She has become like my best friend, which is interesting ~ I mean she's my daughter of course, first but she's just such an amazing young woman and I know she is going to do great stuff.   Same with Julia. She's still quite hyper and kind of a mini-me; but she is also going to do so well; she already is. She won her school's Geography Bee and she is always making me proud - even when I'm yelling at her for whatever. I see myself in her. And Liam. Wow, your baby brother. He's getting big Bryant. Sometimes I can see you in him, but mostly I see you in Emily.

Enough about that. Back to my rant. So I cry, alone always when I cry. No one sees it, but I suppose putting it out on a blog on the Internet will not change much; most people probably could have guessed that. I cry because I cannot believe how much I miss YOU. Everything YOU.   It's hard to live for so long with God's Glory, a Living Miracle and then have it taken away. I also know I should be grateful and I am for having the miracle for 20 years.

March sucked hard core, I'll tell you that. I could not believe it when I heard Kathy died. Almost to the day of your passing by two years. How weird is that? God. She was such an inspiration, that's for sure and I remember how much you loved her. And how much she loved you. They had a slide show of her life playing at her Service, which we attended and there you were, in a slide on her lap with Emily. You guys had so much fun. I used to leave the house to do errands and wonder what mischief you three would get into ... it was always something fun.   Not that I'm not a fun mom, I was fun in different ways, just not in doing craft-stuff.

I have seen Christine. She was able to have a nice get-away with her husband - she looks great, as usual.   Ditto Hanna. She always looks great. We are thinking maybe of going to Prague with her (Emily and I) if it's possible. I think you'd find that amusing. Nate watched the house and the stoooooppppidd cats while we were away. It's funny how you left me, not alone; but with friends who remember so much about you, so much good.

We were thinking of hitting up Disney for a day while in FL but decided against it. I need to plan it out so I have time to process and really do it right. It was our place Bryant and it will be forever ours. So many memories, all happy ones. I remember getting home from Disney and starting to plan the next trip right away! Your eyes would light up and you'd just love every second of life, whether at Disney or even at your sickest. Come on, how many people are like that. You are a hard act to follow. I am so weak compared to you Bryant. I still wonder and think "Why was I given such an incredible miracle" a testament to the Greatness of God. Not everyone sees it that way, of course. But I did. A glimpse of perfection in such a great disguise.

So I guess I will try and be strong - which I suck at. Year Two is a suck out loud year. I think the first year was such a shock that it didn't seem real. Now it's more real and more miserable. We are hoping to donate your wheelchair to this school that makes wheelchairs from donations for kids who need chairs. You would be all over that. I really hope we can do it. I know that would be a great tribute to your life.

Well that's it for now.   You are always with me. I never try and forget, I always have you on my brain, sitting there ~ wondering why..... knowing the answers are so clear and obvious - everyone dies. But not everyone lives. Not like you did. So you win :)   I am now on a quest to find the C22C song where you and May sing and Carl plays the music. When I find it, I will upload a video .... stay tuned.

Love and Miss You Zuckerman,

Mommy xo xo

Poem for Bryant - by David Deane

2011-03-23T20:20:00.000-04:00

March - by David Deane for Bryant Paquette~
Bryant passed away on the first day of Spring 2009

March ~~~~
From winters lion like fury
will bring a hint of spring to the judge and jury
Like a cool autumn day the red wings come from far away..
(but not today )
un-yielding is winters wrath march brings a thaw.from feburary's destructive path
March will demand and end winters stay.
and pass through the warmth for april and may
(but not today )

Bryant's Amazing Life of Grace

2011-03-21T15:36:00.000-04:00

March 21, 2011

2011-03-21T15:34:00.000-04:00

(See Video below)
The First Day of Spring ~ That was the fateful day you left us. We miss you so much Bryant. But in Spring is re-birth, an awakening, and a peace that you left because you were done. You were tired. You accomplishe what you needed to. 20 years doesn't seem long enough, not by any stretch of any imagination, but I suppose if you hold that up agains the odds you were given on the day you were born, I would say Las Vegas would be ahurtiin'. They gave you 24 hours. You gave us 20 years.

You showed us grace, dignity, life, love, strength, courage, hero-stuff. Real time. Real life. You went through so many tough things and came out smiling, probably to teach us more stuff ... if only we open our hearts. We did, we opened our hearts and we got a miracle.

I love you Bryant more than words could ever convey. But you know that. Your face shows it in all our pictures and vidoes and the legacy you made. You loved back. You taught so much to so many. We are forever grateful to have had you in our lives.

I continue my quest now, without my Spirit Guide here in a physical sense, it's hard to get my bearings. I try, we all do, we try and restructure our "new normal" after losing our centerpeice. Sure, you are still with us, always will be, and for that we are beyond blessed. You personified perfection in your Grace and Love. In what may be perceived as "weakness" or "disability" you brought ability and strength.

I don't know what I'll do today. Probably enjoy the Spring Day and think of you and how you LOVED the Spring, the Wind, how you loved life. And try to find some focus on a day that just sucks out loud.

Love & Miss you Always ~ Until we see you again,

Love Mommy xo xo

Glow Bowling

2011-02-28T23:55:00.000-05:00

Bryant! We went Bowling at King Lanes. Christine arranged a nice get-together for us to bowl and see each other. It was fun and you would be quite amazed to know I actually put on bowling shoes. For real! I actually didn't do too bad and we discovered that Emily and I bowl the same. We have a wicked technique!!!

As we were bowling, the juke box all of a sudden started playing "Brick House" ~ very odd. I almost started crying because it reminded me of how much you loved that song in the movie "Muppets from Space". That's the movie with the song also "I'm going to go back there someday" with Gonzo. That song always made me misty as well. Anyhooooo.... I was smiling while it played, decidedly better than crying :) We had a nice time and we thought about you and how you tolerated bowling as long as you had some entertainment from your loyal subjects.

Christine was there, of course, with Terry and Hana, Peter & Chucke, Nate came as well. It was so nice to see everyone. We all miss you Bryant. Christine asked to have the bumpers up, which is probably reflected in my score and why I scored above a 50 :> No complaints though it was a fun night.

So there you have it. Missing you tons & tons & tons. And thanks for the song :)

Mommy xo xo

Emily's viewpoint - A sibling Speaks

2011-02-16T16:16:00.000-05:00

My Guiding Light ~ by Emily P.

I told myself I was dreaming. I told myself to wake up to escape the dream. I squeezed my eyes shut and tried to wake myself. But the problem was that I was already awake. Reality surrounded me everywhere, I was not safe within my mind as I had thought. I opened my eyes, the shrieks echoing in my ears. I got out of bed mechanically, without any sort of feeling or emotion. My mind seemed to be running on some form of autopilot, and my body was following suit. I stood at the top of the staircase, listening to commotion going on just below me. My heart was pounding out of control, I could hear it thrumming in my ears. My mouth was completely dry and I tried to form some sort of thought in my mind, but nothing was registering. Well, one thing was, one single thought that kept repeating itself over and over again: he can’t be dead.

That was the morning of March 21, 2009. Nearly two years ago now, but if I try, I can recall the memory as if it happened hours ago. The smells, sounds, and sights are as clear as day, and probably will be forever. That was the day my brother, Bryant, passed away. He was 20 years old, and to me, immortal. If a passer by were to hear me say that and then see a picture of Bryant they’d probably think I was crazy or in denial. This would be because he was physically disabled. He got around using a power wheel chair, breathed through trache in his neck, ate through a G-tube inserted in his stomach, and spoke using a device called a Dynavox. He looked fragile, he appeared helpless and ill. And maybe he was ill. He was in fact medically fragile, everybody who knew Bryant knew and accepted this fact, well, to an extent.

Bryant was born with a chromosomal disorder that led to physical anomalies and some physical limitations. From birth his life was seen as a struggle, a fight to survive. Doctors told my parents he wouldn’t live 24 hours, but when he did they changed that to a week, then to a month, then to a year. But as time passed and Bryant continued proving them wrong, people began to see there was something beyond the “disabilities,” there was a real, living, breathing, functioning, and happy person under the supposed “limitations.”

My mother has said that the human spirit is one of the most powerful things, and I believe that. Bryant lived everyday to the fullest, never letting petty, silly things bring him down. I can admit that I still allow small things to this day get me down, but not for long. Growing up with an amazing person like Bryant has taught me a lot, and changed be for the best. I don’t want to say he inspired me because he was so “pathetic” and “sad,” because that would mean it wasn’t Bryant who inspired me. Bryant was neither of those things. What I mean is that he rose above the challenges and accomplished more than a lot of people are able to in their lifetimes. The reason he inspired me is because he was able to get past his own personal daily battles and smile, laugh, and share his happiness with others. He was a joy to be around and was always able to lift my sprits.

Unfortunately, life isn’t fair. As the saying goes I suppose. Life throws a lot of unexpected and oftentimes unwelcome hurdles for us to jump over. Sometimes we stumble and fall and it takes awhile to pick ourselves up and keep moving forward, but with help from loved ones and inner strength and perseverance, we find a way to get back up, dust ourselves off, and keep going. It may have taken myself and my family awhile to find a new kind of “normal” without Bryant in our lives, and we may still be working on that, but the point is we are. We’re picking up the pieces and supporting each other as life inevitably moves forward.

That morning was unexpected, and highly unwelcome. I remember my siblings coming out of their rooms at the early time in the morning, wondering what the commotion was about. I managed to keep my shaking hands and racing heart from alerting them to what was happening. Instead I assured them it was okay and to just stay upstairs for the time being. Inside though I wanted to cry, I wanted to scream, and more than anything I just wanted everything to stop, to rewind and start over. This wasn’t supposed to happen. Bryant wasn’t supposed to leave me; leave us.

My mother came up the stairs, she wasn’t crying or screaming, she actually appeared calm. She briefly explained they were bringing him to the hospital, but it didn’t look good. Again the tears tried to break free but I held it in. It’s like we were both trying to keep ourselves in control, because letting go of that control symbolized no hope. Maybe if I didn’t cry it meant he would be fine. We would all be fine. And I’d finally be able to wake up from the nightmare.

I watched out the window from upstairs as the ambulance pulled out of the driveway. My sister and brother were in their rooms, clueless as to what was going on. I wished I could be like them. I wished in that moment I could just shut my mind down and pretend that nothing was real. If he was going to leave us, maybe this whole life was a dream, because I couldn’t imagine a life without him in it.

About fifteen minutes later there was a call from the chief of the New Boston Fire Department, who was actually quite close with our family since both my parents had been EMTs. He explained he was going to be coming over to pick some stuff up, and I felt my heart drop and rise at the same time. He wanted to come get Bryant’s Bert doll, the character from Sesame Street. It was a doll that Bryant had had for years and years, a doll that had pretty much become apart of the family. I was still numb at this point, still functioning mechanically, so I just said yes and awaited his arrival.

When he got to the house he had kindness in his eyes and that scared me. I remember feeling angry at him, for no reason at all. I know now, in retrospect, that I was just angry at the whole situation, and he just happened to be involved in it. He told me that things weren’t looking good but anything was possible. That made me even more mad. Because even though I was numb and fighting with my thoughts, I knew Bryant wasn’t coming home. I knew that it was bad, and I knew it was really bad. So, I felt almost insulted he would lie to my face. I just held in the tears and nodded, handing him Bert, trying to keep my thoughts to myself.

I finally walked down the stairs after he left, and it was eerily quiet. There was some mud on the floor from the shoes of the EMTs, and some melted snow. I walked into his room and saw miscellaneous things knocked to the floor and things thrown about in disarray. I sat down on Bryant’s bed and let out a sigh. My entire body felt numb and I could feel my heart beating slowly and rhythmically in my chest. Reality was sinking in, I had left the sanctuary of the upstairs where I could at least try and pretend all of this wasn’t real. Down here reality came crashing down like thunder and lightning, and a steady rain began to fall around me as I sat in the silence.

It wasn’t until about an hour later that it was confirmed that he had passed. It was almost immediate that the tears finally took over. I had held them in in front of my siblings, the chief, and my mother. I closed the bathroom door behind me and fell apart, letting the emotions completely overwhelm me. At this point it was just a seemingly never ending flow of pain and sorrow. He was really gone. Life had officially fallen apart, and would never be the same again.

Relatives began calling and I’d have to fight through the pain in order to speak and tell them the awful, heart breaking, agonizing truth. The rest of the day went by like a blur. Not necessarily fast, not slow, more like it was draped with a foggy haze. My memories from that point on are blurred, I don’t remember if I took a shower, took a nap, cried some more, or just sat with a blank stare on my face and in my mind. I do remember my brother’s nurse of ten years coming over to help out. My mother was upstairs in bed, in what I remember as a coma like state. My father was walking around like a zombie, responding if spoken to, but silent otherwise. My two younger siblings were quiet, but otherwise not as affected as the rest of us. Again, I envied them, I wished my mind could wander to other things besides the past and the painful, aching present.

I spent a lot of time after that day reliving it. To this day, as I said, I can recall being awakened by the screams from my parents, hearing them run down the stairs, seeing the shock and confusion in my siblings’ faces as I felt my entire world fall apart. I remember feeling like I was in a nightmare, and how much I wanted it to end. I wanted to be able to wake up and think to myself, thank God that wasn’t real. That feeling went on for weeks, and would make occasional appearances months after.

It’s been almost two years since then, and I still have days where I stop myself and just think about Bryant. Small things. I think about watching movies with him, I think about helping him reposition himself in bed, I think about walking by his room and hearing him turn the volume up high on his TV, I think about rushing into the room at 7 to put on Wheel of Fortune for him, and more than anything I think about how all of that was taken from my within the blink of an eye.

I don’t dwell on the day it happened as much anymore, more than anything I now try and model myself after my brother. Like I said, not because he was disabled, but because of the internal light that constantly shone from within him. He was a ray of sunshine on a cloudy day, a refreshing breeze on a scorching summer day, and he was that first snowfall in December. I miss him with all of my heart, but can now move forward and not dwell on the painful gap left in my heart when he left. Because now I realize he never really did leave, maybe physically, but he’s around me everyday. He’s in my mother, my father, my sister and my brother. He’s in all of the people whose lives he touched, and more than anything he’s in me. He keeps me going and will forever be my guiding light.

Valentine's Day

2011-02-14T17:12:00.000-05:00

Remembering Bryant ~ Valentine's Day 1989

Well Bryant, it is Valentine's Day, February 14, 2011. I remember, clear as day, 22 years ago, this day, you had your first major surgery. A g-tube and fundoplication. Words that just ramble off my tongue now but, hey, back in the day, we had no idea what was happening.

You were so little, only 4 lbs., 10 oz and they said you wouldn't swallow and could not live on IV food. But you were only two weeks old and how could someone not "eat" ? Or swallow" Seemed kinda drastic to us. Plus, your surgeon (Dr. Karl) was a complete asshole. Excuse the language. But I will say, he did know what he was doing and probably would win the Award for longest fundo to stay in place, 22 years.

Cocky as he was, you my son, proved to be the most cocky of all. Proving everything they said wrong and living despite being told you were "impcompatible with life". HA! That's funny. You were and are the epitome of life. But that's me talking, I am always bragging about you.

I chose the above picture because it's almost funny / ironic to see your little hand almost like saying "Shush, Quiet ~ It's all gonna turn out okay Mom!" So true. I remember the doctors / nurses taking you to surgery, the last attempt to "save" you. A g-tube? Grammy and I had argued vehemently against it, we felt as if we were in the Land of Goz, you know, "Oz" but with doctors who thought they were "gods" so Goz. As it happens, they were right in this instance (and many others) but at the time, a g-tube seemed the furthest thing from what we should be discussing concerning a 2 week old infant. Shouldn't it be colic or baby powder or poop or something baby-like? You know, what bottle to use. I was still pumping breast milk so maybe a conversation with other moms about the sleepless nights, the nursing, the swollen / always wet feeling from engorged breasts .. but no. I had that; milk coming all the time; but I had to pump it in a room and then refrigerate it so they could try and give it to you ... but you wouldn't swallow.

Dr. Bell ~ he decided to bring you for a "swallow study". I don't remember signing off on it or even knowing about it, but as I wandered in, still pretty darn sore from MY surgery (c-section) Grammy and I came into the unit ~ and suddenly it was pretty obvious something was very wrong. We were ushered into a room with Dr. Bell and the attending (I think it was Dr. Rhodes but I am not sure) and they were grim. You had almost died. They had to "work" you for over an hour. You apparently failed the swallow test and instead the liquid dye went directly into your lungs and you almost died from that and now you had pneumonia. Huh? What? We were just coming in to see you? How was this possible?

Oh the joys of Parenthood. We were told things were going to get worse. You probably would die from that (but of course we had been hearing this now for 2 weeks for whatever your issue of the day was so I wasn't overly concerned ... I was in the Red Zone from the second you were delivered and it wasn't gonna change to green pastures any time soon). We went to see you, there you were, lying there in your little isolette. None of this seemed real or possible. When the Hell was someone gonna wake me up from this nightmare?

Of course, Mr. Cocky Bryant got through that little blip - recovered nicely from the pneumonia and then we were told a g-tube was the only option. Huh? What? Again, our stupid faces looking dimly at the doctors. Serious, they were not kidding. Dr, Karl was impatient. Grammy asked "what is the risk" and he answered "He can die". Just like that. He was not one for bedside manner and began to lecture us on how all our questions were now closing the "window" he had so nicely set up for us to have surgery. Gone, the window was gone. Now if we were LUCKY, maybe he could fit us in the next day and with that he left us morons to our own selves. There. That would certainly teach us a lesson in questioning anyone in the Land of Goz.

Well, a window did open (probably because he owned the surgical unit - everyone there apparently agreed he was definitely "Goz-like" and we were freaking LUCKY DUCKY to have him even bothering to talk to us at all. Sheesh. Well they took you in and out you came with this rubber hose. Strange it seemed to us. I remember when you came home, it was your favorite toy. You used to love to swing it like a bat and then pull it out so you could see me lose all color from my face and run around the house screaming for a g-tube. And the time we took you up north without a spare one and yours came out and I had to sit in the back seat of my Camaro with you holding the tube in place. You must've thought, My Goz, why on Earth do I get stuck with these stoops for parents? Why are they taking me up north. I am a sick little guy, what is WRONG with them.

Ha ha. We were nuts. And you were beer-nuts. Remember we used to call you that? Crazy days Bryant. But we learned, slowly and after that g-tube incident, we learned to pack a little more carefully. After all, we were dealing with a graduate of the land of Goz.

So Valentine's Day, 1989. G-tube / Fundo Day to us. Looking for something to buy you, all the Gift Shop had was hearts and chocolate. Thinking that wasn't gonna work for the g-tube thingy. But I did buy you this little heart balloon and waited for you to come out of surgery with Dad and Grammy. Hoping you didn't "die" since our trusty surgeon had assured us that was a good probability. Guess he didn't like the odds ... but that's the irony of it all, you beat the odds time after time after time.

We miss you and the crazy stuff Bryant. We had our Reunion of your friends on Saturday. We went "glow bowling" and I even wore bowling shoes. That in itself would have made you laugh! You used to bowl there, King Lanes. It was fun and nice to see everyone. Again, you are everywhere even on Valentine's Day, I have a story ... you always had us hopping Bryant and it was always crazy stuff. Good crazy though and I miss it so much.

And then we saw them, Tweedle Dee and Tweedle Dumb, Dr. Karl and his Stupid Intern (also known as super ass kisser). They were triumphant in their walk to tell us they had succeeded but it was far worse than they expected. Your stomach was the size of a pea. I remember Dr. Karl showing us with his fingers "the size of a pea" and I wanted to smash his face in. He would start you off at 1 cc per hour. That didn't register with us at the time, but now it's like "wow, that's not good" thankfully we didn't know that and figured, hey 1 cc is better than no cc's. He also warned us that this would probably not work, the fundo would come apart and surely you would aspirate again and die from it. Then he left the room abruptly, apparently bored with our stupidity and the fact that it did not compute with us. Die? He isn't going to die. Why do you keep saying that?????

Well the fundo held. Up to the end. And your 1 cc turned into 5 and then 10 pretty fast. Apparently your pea-sized stomach was pretty darn resilient and could expand quickly to absorb food (I will put a plug in here now for my genetics, you probably get that from me ;) haha!).

Again, the picture says it all. You had it under control. I just needed to be quiet ... and let you do your thing :)

Love & Miss ya Bryant. xo xo ~
Mommy

Bryant is 22

2011-02-01T19:13:00.000-05:00

Bryant, Wow. What can I say? I made the video so I wouldn't have to say a lot. 22. Today is the day you were born. Remember it clear as a bell.

We miss you a lot. Today was hard but creating the video brought me to the photo albums which, in turn, led me to see all the happiness and joy we shared and had. It is amazing to look back at a life well-lived, one without regret. To know, hey, we had a blast. You showed us a lot Bryant and for that we are thankful.

I am trying to open myself to the Universe, you know, Karma and stuff. Lately I have been having not-such-great luck but I guess it takes practice. You never had a problem with that type of thing :)

Daddy is better. He was feeling sick a little but he doesn't show his sadness and stress like I do. I, apparently, according to Emily, "Have no filter" but you, of course, already know this fact to be true :))) Daddy keeps more inside, but when I think of you two and how he'd come and see you after work, I recall he was usually the "fun" one. One of the pictures shows you in his van. You're so happy to be in the driver's seat, although it could be argued you were in the driver's seat in more ways than one in our lives. You also are on the swingset with Emily and Dad is between you both and, as per the norm, I have the camera taking photos of you guys! If you look in the background, there is the van ~ with the side door open, dad must've been doing something at home or was just getting in from work and there you guys are, with dad on the swings. So a lot of happy memories, Bryant.

So happy Bird-Day. I used to say that to you and Emily, remember?!

Love & Hugs, Missing you Always,
xo xo ~ Mommy

Happy 22nd Bird-Day

2011-02-01T19:05:00.000-05:00

One More Day

2011-01-28T22:25:00.000-05:00

Bryant

2011-01-25T19:38:00.001-05:00

My Ecstasy

2011-01-25T19:09:00.000-05:00

I have been thinking about some things lately and have put them into a category regarding two different input areas. First, I saw a show on Ecstacy and how it relates to Dopamine in the brain and second, I saw "Eat Pray Love" (saw .. did not read the book).

Anyhooo... here is my latest thing. When viewing the show on drugs and how they affect the user / addict, Ectasy really stood out because people use it for raves and in general, to be "high" on life and get the most out of their life / party. Obviously, the drug wears off and it can become quite addicting. Which got me to thinking about my 20 years with you Bryant. Seeing life through your eyes and being your partner in crime on so many adventures, it made me realize how I was high on life. Now, that Ecstasy is gone. Which might explain a lot of my "down" moods. The second thing was in the movie Eat, Pray, Love and how it talked about being quiet. Mentally. This is quite difficult for me, as you know, since my brain is like a super high way with constant multi-lane, high speed traffic. Even at 3:00 a.m. when I am trying sooooooooooooooooooooooooooooooooooooooooo hard to go to sleep.

So I have realized a few things. A lot of what I am experiencing is probably a withdrawal of sorts from the Ecstasy of being with you and having all the excitement of Bryant in my life. Everything was exciting with you. Your smile was incredible, you zest for life made it exceptional. At first, when you left, I tried to find you somewhere, and realized I cannot replace that. However, what I am trying to do now is focus on the "quieting" of my ever-racing mind to find the Ecstasy again, the zest and love of life, being high on being.

Easier said than done, of course. But it has given me a lot to think about and a lot to NOT think about. I understand with you we just did. Never really though about consequences too much, just did. And now I have to find that fire again. I know if I quiet myself and "listen" I will find it. I suppose because you left, I have tried to "get it" myself, but it has to find me. I have to let it. I have to "let go" and, as we lived with you, let it happen. Being the super control freak that I am, I realize the Herculean Task at hand :) But I think I know now what to do or what not to do.

Dopamine is an interesting brain chemical. And it's fascinating how it's made and how it works. And when I think of you, I get that happy thought and in my dreams now, I see how much happiness there can still be. I am taking a Creative Non-Fiction Class and I am certain most of my essays will be on you and your life as well as your interactions with the family and so forth. Emily is also in the class so I shall share some of our writings. I think, what would mean so much to me, is for Emily and I, and possibly Julia, to write about you and us and life. It all intertwines and sometimes I find myself so angry because I am so sad. I know it's a stupid useless emotion and I know how incredibly blessed we are to have each other and to have had known you (and continue to know you :) But damn the grief. Damn the pain that I can feel burning, almost tearing my heart. Damn it. I know you would not want that. And I know you guided me as long as you could. And I know you were tired. And I know I am selfish to want that and to struggle so much so without you.

Emily makes me laugh. She quiets my soul occasionally and I can see you in her and how she was in you. Julia is still Type A and definitely keeps me amazed. We are all in it together. And Liam. Hmmm... Liam. He's a little imp like you. That photo of you ... really really reminds me of how you made life interesting.

So the Question is now, can I find my Ecstasy, can I find my balance? I will tell you Bryant, I have been off-kilter for awhile. Things are becoming more clear and I am trying to "still" myself to hear ... we shall see. I know that you brought me to it so many times and now it is time for me to realize or at least start my new quest. A quieting of the soul, to listen ... the spirit is so restless and not in harmony with the soul. And I have heard, and I know ... the motorcycle incident ~ quiet, shhhhhhhhhhhhhhhhhh..... I guess I was expecting more fanfare, you know? So quiet I shall be, listening and waiting, attentive and, perhaps, my learn something new. Is it possible?

Here are the Definitions :
****Ecstasy (emotion), a trance or trance-like state in which an individual transcends normal consciousness
****Religious ecstasy, a state of consciousness characterized by expanded spiritual awareness, visions or absolute euphoria
*****Ecstasy (philosophy), a term used to mean "outside-of-itself".

Love,
Mommy xo xo

Living

2011-01-09T16:24:00.000-05:00

I was thinking today about some more "heavy" stuff ~ like what it's like to be resonsible for life, truly responsible for someone else's life. Sometimes moment to moment. And how does that effect someone?

I know with you, Daddy & I had to vigilant, always "on" always ready ~ what was lurking behind the corner? It wasn't all roses and glory ~ as someone decided to point out to me. The irony is I was aware of it on a constant basis. Which brings me to "choices". Sure, we had the choice to not be vigilant, to become a victim or to doubt this or that. And at times, very rarely, but at times, I did doubt. Like for example, with your schooling. I was always in a hostile setting. No one got it (except save a few other nuts) which is what we were deemed. The regular public thinks of teachers as almost God-like Status, right there beside Doctors, having fallen from the sky. Again, we have choices. People go to school to become teachers and they may be truly caring, wonderful people, who "want to help" or "give back" or whatever other platitude they can come up, but the truth is, it's a choice.

They have made a choice to be a special educator, a therapist, a doctor. They can change that choice (not without consequence, but usually not life-threatening) and find another chosen profession / job.

Here's the thing. When a parent has a baby with special health needs, or medical fragility, they DO have a choice. They can walk away or they can stay. People used to say to me at times "I don't know HOW you do it" = meaning taking care of you Bryant. I would be speechless at times, like, wanting to say "What are my options MORON" What am I supposed to do? Did I CHOOSE for my son to have these life-threatening day to day health issues? Did HE choose it? No. So we "do" what we have to do because we have chosen to fight it. And you did Bryant. It was a choice for you as well. You, in my opinion, had the hard part. To get up every day with a smile and a zest for living ... but let's not get off track ~ this is about choices.

So having a child / baby who needs life-interventions on a daily, sometimes moment to moment basis, as in a tracheostomy or a g-tube ... what does that mean? That means if you make a mistake, it could cost your child his or her life. Literally. One small tiny error in judgement could cost them their life. Now some may argue that's true for all parents and I would suggest it can be, at times. But not EVERY DAY, EVERY MOMENT from the most simplest of things like eating and breathing. Sure, parents have to worry about their infant choking, but do they worry every single mealtime about aspiration or if they are making the right choice for food / calories? Do they worry on that trip to the Mall if that will be the one time their child is exposed to a deadly virus or bacteria that takes their life? Should they have just stayed home?

That happened to us. You got chicken pox somewhere. You weren't even in school at the time and no one else in the house got it! So where did it come from ???? How did we fail you? Thankfully you lived, but you suffered for months with the lingering effects until you were finally back to your old self. Same with the pneumococcal. Who knew? Where did you get that?

I had to choose your nurses, teachers, etc. School, that was a lot of fun. Due Process, Mediation, IEP meetings that went minimum of 3 hours, usually more like 6. Wondering if I was insane? Finding out I wasn't. That was the hard / sad part. Being on the SAC and other organizations it becomes clear that the real deal is with how much a parent can give and will give. We gave all and, in turn, received all from you. It was beyond worth it. You were a fighter and the Rewards were beyond description.

I look back at your life Bryant without regret. I know we made the best decisions available to us and you took them and ran with them. I suppose that's what makes it so hard and why I miss you so much. My choice and your choice was to live. For you to stay with us, to live and to just continue on. We were happy with that. So when you left, it's this open gaping wound that just cannot heal. The void is too large.

The person aforementioned said "But you were worried" as if in death I am "relieved" of worry. It is now replaced with absolute emptiness. Sure we were worried. Again, the worry was, chiefly, that you would die. But you lived, 20 years. Almost as long with me as I had without you. I was 24 when you were born so that means I had four years on the other side. So having you in my life is more than not, mathwise. I ran the numbers =D Anyway, yes, my worry was that you would die, but as you got older it changed to "what if I die first" and how you would be taken care of by anyone else. Or if Daddy and I died and left you. So either way, it was a no-win situation. There was no win coming out of that conundrum.

Anyway, that is what got me thinking about choices and life and the fragility in which we live. Most will never have such a collosal "choice" and certainly never experience the responsibility that comes with ensuring someone else's life, literally. There was no "I'll do it tomorrow" for vital signs, those were done almost every time I looked at you, watching, waiting, trying to stay one step ahead of a virus or problem. We were vigilant. And you were Valliant. That can be your name now, Bryant The Valliant. Always forgiving, always loving, always the Victor. Even in your death, I have a choice. Yet this one is so much harder Bryant. Life and living. Choices. It's so hard to do without you, which makes me pause at times and marvel at the wonder of it all. I always knew it, you were the actual driver of this whole thing. You were the one supplying us the will the fight.

Now I have to draw upon all of that. Sure, the worry is gone and it's replaced with the Horror of having to live without you. I dream of you often, the nightmares have subsided a little bit and are replaced with simple dreams ... not too remarkable. Last night I dreamedy of you when you were young, how you would stand and take steps and we would be soooooooo happy you were learning to walk. But maybe the "standing" in the dream means you took a stand. A literal stand for living. Again, I have to defer to you Bryant. And try and find the answers of life through a life well lived.

It is true that the resonsibility of keeping you alive is gone ~ ultimately we failed, at least that's how it seems at times. No matter how much we are told there was nothing we could have done, it still feels like we failed. And I don't dwell on that, you made sure of that - you chose the best possible peaceful way ~ I knew when I saw you, peace had found you, you did not suffer. Yet we suffer ~ and I try and find peace at times in the fact that I had the enormous pleasure and gift to have you in my life. To be resonsible for you. Somedays it felt like you were reponsible for me. My stabilzing bar :)

In my dreams, lately, you are happy and content ~ for that I am thankful. So many memories ~ so many happy times ~ so many right decisions. So many choices that we made together that have enriched my lfe far beyond words.

So while it may seem to some a relief or that maybe somehow it is "better" this way to them, they can't see, and probably never would be able to see the ultimate gift of life in having you. Worth the worry and all that. Worth every second of it. Bryant the Valliant. My Love Always. xo xo Mommy

Bryant

2011-01-09T16:23:00.000-05:00

Winter 2010/ 2011

2011-01-02T12:38:00.000-05:00

So Bryant !

It has been awhile since I wrote but you are in my thoughts and daily conversation always. I have had some ephiphanies of sorts here and there and things are finally starting to come together a little more about life and all that heavy stuff.

We miss you as always, some days it's almost too much to bear, I feel like I need to just go and lay down and sleep, but for me, sleep does not come easily. So I think about all the stuff we did and how much I love you.

We were going to try and go to FL but things kinda fell through so now I have come up with a new plan, we are going to go to FL/Disney around the time you physically left us. I know you didn't leave on purpose, you would never have done that, you loved us so much as we loved you but that is the way life works and we have learned to accept you are not here physically.

I am continually in an angered state though, although I try to shake it, I can't entirely and had predicted that right off the bat, I would probably stay "stuck" in the anger stage. But I find that okay now, because I realize so many things.

Here is my latest epiphany. While many would pity you and us because of their imagined ideals of perfections, we knew better and we knew you were, in fact, perfection. I have seen it and lived it and I know it. But the definition of perfection is where the issue comes through and some people seem to cling to the ideal of perfection meaning "nothing hard". It's actually the opposite, to view perfection you have to look past the ideals of human thinking and into the Glory of God and the Human Spirit.

I was reading a lot in the Bible and although I did know Paul had some sort of affliction I really never delved too deeply into it. I then heard something I hadn't heard before regarding Paul. The "thorn in his flesh" is now thought to be perhaps seizures. At the time of his life, epilepsy was considered a "weakness" and the Corinthians did not want to accept anything from Paul because of his "weakness". In his letters, he was strong, but physically he appeared weak and imperfect. He asked, three times, for this to be taken from him, but was told "in weakness you shall be made great" and that is when it hit me.

That was the case with you, you were made great because of perceived weakness on the part of human thought. But beyond that, seeing past that, we were able to glimpse the perfection much like Paul and other Apostles were at the time. Jesus surely could have healed Paul or Peter for that matter, yet he traveled at times with Luke (a physician) by his side. Whatever the case, the affliction Paul had was obvious and made him appear weak. Most wanted to reject him, which is the basic theme of his letters to the Corinthians ~ but God chose to make his weakness his strenth and prove the Glory of God.

So what does this mean? Well to me, it shows that humans have the CAPACITY, if they choose, to see the spirit and understand the greatness. Most choose to look past it or can't see it. And that part makes me so angry when I thin of it, but then I realized, it's not the goal. The goal is that God knows humans actually have the capacity to see.

I often wonder what I would be like had I not met you. Would I be compassionate, strong, empathetic and grateful for all of God's Gifts? The final touch came during one talk where it all came together. That does not make it easy of course. But it does make things make far more sense then ever before.

When Lazarous died, Jesus came to bring him back to life. Jesus paused and cried. Now Jesus KNEW he was going to raise Lazarus and Jesus also knew the Glory of God and the Glory of Heaven and the life after our course here is done. Yet why did Jesus cry? Why didn't he just push the stupid mob out of the way and get it over with already? Empathy. Jesus realized the state of humans and what they would go through because they didn't know, didn't understand and he felt that. He didn't say "Oh fools, I am gonna raise him so quit the whining!" instead he realized and empathized, because he was in a human state, that death is an enemy, a stinging force for those left behind.

Jesus holds that same option for us today and I guess that was my epiphany of sorts. Through weakness, he made you great and allowed us a glimpse into the perfection of human life.

I so wish to be able to write this more eloquently because it really has become clearer to me. The way you lived, the soul I knew, the life behind your eyes, the spirit which chose to live and love. I quoted a Beatles song the other day on facebook, it's the line "In the end, it's not the love you take but the love you make" and that, again, is brought into the light by your love and what you created. It was always about love and life and a testament of greatness to God.

So many are born without the "imperfections" perceived yet live their lives blinded and dulled, unable to see. It is sad in a way because viewing perfection and God's blessings is something powerful and wondrous.

I love you so much and miss you so much but the lessons you taught continue to come through Bryant.

xo xo Mommy

Bryant at the Museum

2011-01-02T12:28:00.000-05:00

New Year ~ 2011

2011-01-02T12:18:00.000-05:00

November ~ Fall

2010-11-03T22:44:00.000-04:00

It's Fall Bryant. You would love the past few days, very windy. Blustery, like the Winnie the Pooh Days :)

I sent in a pic to Disney and they published it on their site:

http://memories.disneyparks.disney.go.com/base/showcase/#/detail/12219

So let's see, what else is new? I miss you, I miss you, I miss you. A billion times would not suffice! Anyway, things have been hectic crazy. You would be somewhat proud of me I guess ~ I am going to SAC meetings still, trying to advocate for kids who need help! Giving you a voice still. Always my inspiration. I miss so much holding you and laughing with you and playing and just being with you. I have tried so poorly to explain you to people who don't know you ... it gets exhausting so I just let it be now ... you made your mark and you made your friends and they miss you and love you ~

I had another dream. In it, something was happening and all of a sudden I was like "Oh my God! I am DREAMING!" you were in the dream, of course, and I told you, Bryant! We have to take this time to be together. I am dreaming and you looked at me like "yes, I know" and it was so awesome. I try and focus on that. I had been having nightmares, those seem to come in waves and I hate them. So I am trying to train myself to recognize the dream and control it so I can spend time with you that way :) Sweet dreams.

Still thinking about the book. I really want to write it Bryant, I just need direction. Motivation I have. I know the story would come and I think in writing I could definitely do justice to your life, at least in a way ~ and I think you know that.

I saw Hanna last weekend and have seen Christine last month. We still talk of you and it makes me smile just to hear the stories of your capers with them :) You're famous in those circles you know! Of course, I talk of you quite a bit ~ can't help it, you definitely inspire me. So I am hoping the inspiration will help propel my thoughts, to really sit down and write. Julia is writing a lot and I think she will be able to help me. Emily, of course, is a Writer also, as you know. So maybe between the 3 of us !!!

Liam is still into Star Wars. You would love that. And Toy Story 3 is out. I can't bring myself to buy it. I did see it at the theater but I don't think I can buy it. It really makes me think of you and our Toy Story Days. Good memories, good times, a life time of love.

Miss you so much Bryant ~ sometimes I wonder how the human spirit can take this type of loss and continue on. I have had some strange experiences and I know and feel things that make me understand, like when I need it the most, it comes. That's how you always were in life here ~ always my favorite! Remember I would tell you that? Ha ha. And I would tell you when you'd get mad at me "You HAVE to like me" haha. But you did more than that Bryant. You loved me, you needed me and I needed you far more. The soul of a wise one ~ that is what you possess, your gift. There is a song - and it, with some modifications says what I feel ...

Starry
starry night
paint your palette blue and grey

look out on a summer's day
with eyes that know the
darkness in my soul.
Shadows on the hills
sketch the trees and the daffodils

catch the breeze and the winter chills

in colors on the snowy linen land.
And now I understand what you tried to say to me

how you suffered for your sanity
how you tried to set them free.
They would not listen
they did not know how

perhaps they'll listen now.

Starry
starry night
flaming flo'rs that brightly blaze

swirling clouds in violet haze reflect in
Bryant's eyes of piercing chestnut brown.
Colors changing hue
morning fields of amber grain

weathered faces lined in pain
are soothed beneath the artist's
loving hand.
And now I understand what you tried to say to me

how you suffered for your sanity
how you tried to set them free.
perhaps they'll listen now.

For they could not love you
but still your love was true

and when no hope was left in sight on that starry
starry night.
You left because your time was through
But I could have told you
Bryant,
this world was never
meant for one
as beautiful as you.

Starry
starry night
portraits hung in empty halls

frameless heads on nameless walls
with eyes
that watch the world and can't forget.
Like the stranger that you've met

the ragged men in ragged clothes

the silver thorn of bloddy rose
lie crushed and broken
on the virgin snow.
And now I think I know what you tried to say to me

how you suffered for your sanity

how you tried to set them free.
They would not listen
they're not
list'ning still
perhaps they never will.

xo xo ~ Mommy

I hope to be inspired Bryant to write again. That's what I need ~ I am so tired so drained and I know I need to write. I shall make this promise, my next post will be a poem to you =D

Speech Class

2010-09-30T21:32:00.000-04:00

Speech Class Bryant! Doing a speech personal narrative on you! Love you, Mommy

School time

2010-09-17T10:48:00.002-04:00

The following two essays are taken from our Critical Thinking Class and reflect on "Cold Hard Facts" that we have undergone or had occur in our lives. Miss you Bryant, love you,

Mommy & Emily

Emily's

2010-09-17T10:48:00.001-04:00

Immediately after reading this I thought of the passing of my brother, Bryant. Mostly because I remember it took me a long time to come to terms with the fact that death means the person is not coming back. It's been a little over a year and I'm actually still in the process of accepting the fact that he may he gone, but definitely not forgotten.

I can remember the morning that it happened as clearly as if it happened just this morning. It's like the sounds, scents, and images are permanently burned into my mind. I remember the ambulance coming, the people running in and out of the house, my parents crying, my younger siblings emerging from their rooms, confused, and me having to make sure they didn't go downstairs. I knew what had happened right when I was woken up by the screams. He had passed away in his sleep. It wasn't like waking up and hearing that and wondering, what's going on? I knew as soon as my eyes opened. And that hurt the most.

My body went into shock for the first hour. After everybody left, I stayed home with my siblings and just tried to keep a calm outer appearance. I went into Bryant's room, seeing footprints from the EMT's shoes on the floor, things knocked to the floor, and his favorite Bert doll (from Sesame Street) sitting on the bed. I didn't cry though. It was as if I was experiencing an out of body experience. Like I knew what had happened but was almost paralyzed in this trance.

We all knew Bryant's life was fragile. He was born with an unknown chromosomal disorder resulting in physical disabilities, but as far as mental goes, he was all there, all the time. I think that's why it was so life shattering. Yes, we knew he was "sick", but he never acted like it. Even when he got sick and ended up in the hospital, he had a spirit that was so resilient, and a twinkle in his eye that made him seem indestructible. His life, and his upbeat spirit inspired me so much to view life differently, and so when he passed, I felt like I lost my guide in a way. I felt lost and abandoned, like, where do I go now?

I cried all day after the morning passed. I cried all day the next day, and for most of the third. By the fourth day I was out of tears. I was back to that trance like state, confused as to why life was continuing despite Bryant being gone. Time didn't heal the gaping wound left from his absence though, but it did dull it. I think losing someone is the most painful thing, and although it is said we come to acceptance, I think there is something in the mind that doesn't ever fully believe. Still now I have dreams he's still alive, or sometimes I break down randomly and think of how unfair it is that he's gone.

All in all though, my family and myself have had to come to terms with the hard facts that he isn't coming back. We've all had to gather up the broken pieces of our lives and try and support each other while reassembling them. Bryant isn't dead, his spirit is so alive within our hearts, and that alone has changed my life. While he was alive he helped me through so much and opened my eyes to things I could have never seen without him, and even now that he is physically gone, he continues to impact my life on a daily basis. Decisions I make, views on issues, outlook on life, and more than anything he taught me to never give up and never let people around me get me down.

School Essay

2010-09-17T10:46:00.000-04:00

I tried to think of what I could write about that did not involve Bryant, since I have spent most of my time writing about him. However, because the situation lasted 20 years, I can't really think of anything "relevant" though other than cold hard facts that have affected my life and my family's life as much.

As already discussed, Bryant was born with his chromosomal issues. I remember the on-going of the "parade of doctors" who came in while he was in the NICU (Newborn Intensive Care Unit) at CHaD (Children's Hospital at Dartmouth). The sum of the information was the "cold hard fact" that he was very sick and probably wouldn't live more than 24 hours.

As time progressed and he continued to live (he spent 4 months in the unit) one doctor, a Neurologist told us that Bryant was unique and there were no matches for him anywhere, he had no syndrome so no one really could predict what would happen. However, based on "cold hard facts" in this case MRI's, CT scans and other medical testing, Bryant was what he was and the Neurologist said "Take him home and love him".

The earliest report we have is when he was a day old and it is an MRI of his brain which suggests severe malformation, absence of a gyral pattern in the left hemisphere, absence of the corpus collosum and other "errors" in the formation of the brain. The doctor says in summation "Whether purposeful movement will ever occur is doubtful". Flash forward to a report at about 2 years old and it's the same words, all the same things are scene on MRI, but the last sentence says "While the above suggests severe malformation, the patient moves all four extremities without any impairment of strength or power".

The cold, hard fact, was that Bryant would have issues resulting from his condition, but the other cold hard fact is that we are all individuals and Bryant proved otherwise. Anyone reading the brain scan would come to the "obvious" conclusion that whoever possessed said brain would have "no purposeful movement" since there was really no pattern to the brain formation. Individuals with "normal" brains on MRI have more limiting conditions ~ so the interpretation would make sense.

Most of what Bryant did, defied the cold hard facts. However, he was medically fragile and that was another "Cold hard fact" to live with every day. He had over 25 surgeries, none of which ever got easier, in fact, they got harder as we gained more knowledge (for us emotionally). Yet, Bryant sailed through all of them, including an 18 hour procedure to do major intra / craniofacial work.

What we did with the cold hard fact was to try and live and adjust our thinking to the task(s) at hand and when he was healthy, to live to the fullest. Of course, Bryant was the catalyst. He had a zest for life which got us past the "facts" that he shouldn't be doing this or that, because he was doing it. The doctors marveled at him and although most do not like to fling the word "miracle" around, we heard it many times throughout his life from the medical doctors.

Having a child with so many challenges, however, makes you a different person and makes you realize how unique each individual is. It also exposes the "myths" of cold hard facts about how we should appreciate what we have because others have less, and bla, bla, bla. If you have to be told that, you probably are not capable of it. Just because someone seems to have "less" it does not mean their quality of life is worse than someone who does not possess those disabilities.

Learning and living that taught us a lot about life and how to treat other people etc. We always took our cues from Bryant, because he seemed to be the oldest and wisest soul and seemed to be the one directing the whole thing. Simply stated, life with Bryant was a journey every day. Despite the facts, he was medically fragile, could die at any time, we chose to view it different, that every day with him and this family is a gift and we have to take the "facts" and do the best with them possible.

When Bryant died, that "cold hard fact" was harder to process and deal with. Death is a cold hard fact which cannot be argued with. I am 1.5 years out and still trying to "deal" with the fact. However, because of the life Bryant lived, I realize that he lived life for what it was and to the fullest extent. Many times, death brings regret and a re-examination of life. During Bryant's life, those were constantly in the background and constant juggling of life's questions occurred. So, when he passed, although my brain did not wish to accept it, I did not feel any regret. It made all of us appreciate Bryant for who he was and how he lived and has made a profound impact on anyone who was fortunate enough to know Bryant.

The reality is that no one knows from day to day and death is a part of life. How we choose to live our lives is something presented to us on a daily basis. Sometimes, it's as simple as giving a smile or a knowing look or kind word to someone who is down and other times it's accepting or asking for help if you need it. And other times, it's just a learning experience where you will make mistakes, and if you learn from them, you can call it a "good day". That's what Bryant taught us.

Many people go through life trying to figure out where they fit or what their "purpose" is or any number of questions about life. Bryant did not seem to have those questions and that is what is most fascinating to me as I review our lives. He seemed to "know" and therefore, was able to guide me, personally, to understand things in a different way from most people.

Despite having medical challenges, Bryant was able to become an advocate and pave the way for others. He spent time in Washington DC advocating and he was an advocate throughout his school years, with me alongside him (for example he was the first trached student to go through w/ a ventilator). Our family was a team and everyone on board with the same attitude and appreciation for life.

I believe everyone has learned from Bryant and we can continue on now from "cold hard facts". It's not as simple as making lemonade out of lemons or something like that, because I don't consider Bryant's situation to be a "lemon". I think realizing that life will throw you many facts, you need to be able to recognize opportunity and appreciation, learn how to adapt to ever-changing things, etc. and be sure to constantly be able to re-evaluate.

I remember this one young man, an advocate ~ disabled by CP and in a wheelchair. He was talking about the City of Boston and trying to navigate that in a wheelchair. So then he said to the audience, "You know a lot of you are going to end up disabled. But you won't call it "disabled" you'll call it old age, but your ass is still gonna need a wheelchair, a ramp, a hearing aid, glasses ...". His point was we all need to understand "cold hard facts" and then try and find ways that make lives better because "life" impacts everyone. Everyone has their issues, whether it would be a disability, death, crime, dysfunction in a family, financial problems, etc., it is something that needs to be dealt with.

We chose, as a family, to live and to just go out and have fun and to love one another. With Bryant gone, that remains our goal. It has made us who we are and has changed us for the better, I believe. His siblings make me proud every day with their compassion and understanding and their love of life too. Bryant made it seem like anything was possible.

Quilt

2010-08-26T13:07:00.000-04:00

So Here It Is! Almost finished. She has to do the stitching around and put on the backing. The quote from your FAV movie will be on there "A heart is not judged by how much it loves, but by how much it is loved by others" and then for the tag on the back I think we will a picture of us when we were at Disney at the Polynesian. It's probably one of the last pics of us all together.

I miss you so much and am beginning to lose it a little with patience among the ignoramuses that I have to live and exist with :( Oh Bryant, what are you going to do with me? I try but sometimes it just pushes me too far. Someone posted a "joke" with the dreaded "r" word and I had a big blow out with them over this "joke". I don't understand how people can be so hurtful or ignorant when life can be so short ~ but so glorious if only you live it with purpose.

Anyway, you will notice the "I see dumb people" t-shirt and I guess maybe I should just buy another one and wear it all the time. HA HA. Thankfully I have friends who know me and understand me and don't judge me as being too obnoxious (okay maybe they know I am a bit over-the-top but they still love me) ~ just the way you did Bryant. You loved me for me. Unconditionally and totally in love. How is that ever replaced? How is that ever "gotten over". I know you're safe and I know you're free but my puny human self cannot let that be enough because it is like a wave that washes over me, intense feelings of sadness and grief and missing you.

xo xo ~ Love Mommy

Bryant Vision

2010-08-03T20:31:00.000-04:00

Sooooo... I was thinking and thinking and thinking about you and your life and how to explain to people how you lived and why we miss you so much. Those who know you, of course, know why, but in general to find a way, maybe even to myself, to encapsulate you.

When you were first born, they told us you were deaf and blind and would probably never have purposeful movement. Pouring over some of your oldest reports ~ some from the day after your birth ~ it was fairly apparent that most did not think you would do much, if anything. One report describes in detail the marked abnormalities and sums it up with these exact words:
Whether purposeful movement will develop in the future cannot be determined at this time, but seems very unlikely.

However, as the reports went on over the next few years, I found one that was describing the incredible malformation of your brain again and then this one says:
"The CT scan reveals a parallelogram shaped calvarim with marked hypertelorism and an enlarged space between both orbits which houses the medial frontal lobes. The left hemisphere demonstrated no gyral pattern and has a very small centricular system to a moderately enlarged one in the right.
Yet, on exam, he uses all four extremities without any specific abnormality of strength or power."

So as I pondered all of this, my epiphany is the following. When you were born, we were given no hope. Yet, I recall one day, looking into your eyes and seeing something I had never seen before, nor could really describe. I remember saying to your father "he doesn't seem like a baby". I meant this as in your soul, your spirit, your eyes. Looking into them, you seemed so much older and so much wiser ~

The epiphany of sorts is that although you were not supposed to see or hear, to have vision, hearing or purpose ~ that is exactly what you possessed and exactly what you bestowed upon me. And anyone you chose to let in, anyone you chose to give your "Bryant Vision" to. Kind of like magical glasses. Magical Ears. Everything with you was different, unexpected and magical and, in fact, had some type of purpose. But it wasn't obvious. You had to get through all the other "stuff" first, to see past it. That is what was so interesting about the medical report. The doctor went through all the "stuff" and then "saw" past it in what you did. How you defied the very words written on the paper.

What you gave me, though, Bryant, was something far more powerful and sometimes exhausting. Yet I try to be like you. You always had a smile, a truly infectious smile and a sincerity about you that could not be denied. And that day, in the Neonatal Intensive Care Nursery, the Magic Glasses and Magic Ears were put on. The issue is, they cannot be removed. I see everything now as through those glasses and with those ears. But when you were here, it was just so much easier to have them because I had you to share them with, after all, you were the reason for them.

Therefore, when I try to explain to people about you ~ life with Bryant ~and how life without you physically here, it is impossible because I do not believe a word or words exist in our language to explain it. I grow exhausted trying, struggling with words and descriptions and it always falls flat, making little to no sense. It's like I was given a different view, a different angle and everyone else is sitting somewhere else. The view I have had with you, from you, with my Magical Glasses and Magical Hearing is always glorious and incredible. It's very much like that medical report and how you lived your life without any specific abnormality in strength or power. Perhaps to the average person, that would sound preposterous. Can I not "see" you had challenges, you had disabilities, you had serious medical conditions? The odd thing was I never really "saw" those as much as "dealt" with them, like the report, the words were there, I knew what they said, but I always knew what you did and it seemed to mute the obvious and give way to the incredible vision of life lived in strength and power. You empowered yourself and those of us around you who got to put those glasses on and get Bryant vision. See things in ways no one else does, take the time to listen, to hear things in a way no one else does and certainly, to live with purpose.

So, now you are gone physically, and I am permanently changed by the Magic Glasses and Magic Ears. My question now is purpose. What to do with them? How to share them? How to live with this "view" which is almost always different from everyone else's? Some people know, some people understand, thank God or I fear I would probably go insane. There are others out there who have had the incredible blessing of having you in their lives and there are those who have children who possess the ability to hand out these glasses and ears.

I re-did the slide show / video to capture all the "stuff" we did. But it wasn't the stuff or where we were, as much as it was the way we saw it, the way we heard it and the way we did it. Bryant's way. And doing it your way always seemed to bring some type of surprise that was one of those "aha!" moments. I think about that a lot now and when I see the video, I can think of all the memories around the picture, not just the photo op of you here or there, you know, like playing the game "Where is Bryant today" ~ since you went almost everywhere and in each picture it's some new adventure. But those glasses and those ears and the purpose and intensity in which you lived your life was transferable to us, those of us who were around you to "get" it. How amazing is that?

What is also amazing while wearing my glasses, courtesy of you, is seeing how things can always be different, how they can always be viewed from a perspective or angle if we are only willing to do so. And even with that, I'm not sure if it's something that can happen without someone like you to transfer that ability. I often wonder what I would have done or become or been like had you not been in my life. I do know that life without you now is hard. But that is no surprise. I always knew that would be the case from the first time I saw into your eyes and knew something was up. I just didn't have the words for it. Still don't. So I'll settle now for the glasses and ear and purpose analogy I guess, because it does make sense to me. And when I am annoyed or wondering why no one else can see what I am seeing or thinking or feeling or hearing, I have to remember, ah yes, they do not have the glasses!

Thanks Bryant for the Magic and Purpose. I miss you and love you Always,
Mommy x0 xo

Bryant's Video

2010-08-01T13:59:00.000-04:00

Bryant's Video

2010-07-22T21:20:00.000-04:00

July Stuff

2010-07-22T21:08:00.000-04:00

Hey Bryant! We miss you soooo much. Been spending tons of time at the beach, making me think of you, which is kinda not true because I think of you ALL the time so nothing really makes me think of you, I just do. Always. So along those lines I am trying to upload the video of you and us and that line from the Tarzan movie, song by Phil Collins "You'll be in my Heart" that's the part "always" and it's so true. Grammy & Grampy flew in last week for Dick's Memorial Service. Remember Dick? We used to go to his house for the Tuesday Bookstudy. Wow, it seems so long ago, yet also seems like yesterday too. Anyway, they were here for a few days. I am thinking of doing some stuff which I will fill you in on later once I have decided. One is for sure, we are having a quilt made of some of your clothes. It will be absolutely gorgeous, the irony of course is you would kick it right off of yourself if we EVER tried to put any covers on you, haha. So I will be sure to remember that. You did like games with blankets though so that shall also be remembered when we get the quilt made. Hopefully over the summer. I will post pics when it's finished. I, of course, am not making it since everyone who is anyone knows I can't sew a stitch (pun intended). I got some stickers for the van with the stick people. Everyone has those now it seems. So I got one for each of us and they are on the back of the van. I also got an "in memory" patch for both the van and truck so everyone can see your name :) And know we miss you so much.

I came across that song "You needed Me" By Ann Murray I think ... anyway I was listening to the words and I think that describes my relationship with you.
I cried a tear, you wiped it dry,
I was confused, you cleared my mind,
I sold my soul, you bought it back for me,
And held me up and gave me dignity,
Somehow you needed me.

You gave me strength,
to stand alone again,
to face the world again,
out on my own again,
You put me high, upon a pedestal,
so high that I could almost see eternity,
You needed me, you needed me.
And I can't believe it's true,
I needed you, and you were there,
And I'll never leave, why should I leave,
I'd be a fool,
'cause I finally found someone who really cares!
You held my hand, when it was cold,
When I was lost, you took me home,
You gave me hope, when I was at the end,
And turned my lies, back into truth again,
You even called me friend.

You needed me, you needed me.

So that's how I feel. It sums it all up. You needed me Bryant and I need(ed) you. So much you taught me, so much I learned, so so much.

I am posting the video, I hope I can get it on line for this blog and I am also going to post the pics of the van stick people and in memory thing.

Hugs to you & Love Always, Eternity Bryant, Eternity,
Mommy xo xo

Love

2010-07-08T23:10:00.000-04:00

Bryant, here is my latest purchase. I got these stickers for the van and truck. I think you would find them, at least, amusing :) We have been to the beach often and I am searching for a sand dollar. Hopefully I will find one before the summer is out. It is hot lately and you would absolutely be loving the beach with us. I missed you so much at the Assembly even though I know you would not have been super-thrilled to go, I know you always had a smile for me. That got me thinking about you and how you gave me so much in the way of love and happiness and how I have to remember that always. It's so easy to get overwhelmed with the grief of it all, missing you so much and just being so angry and sad. It's all about taking the good with the bad. The blessing of having you in our lives surpasses everything, even the bad. So even missing you so much it hurts until I feel I can almost no longer bear it, I have to remember the good because there was and is still so much.

We met a family in Amherst who has a son in a wheelchair and we showed them the van and talked about the Dynavox and what a pro you were in using it, particularly with your jokes and comments :) And how you could memorize over 200 pages with absolutely no effort and just breeze through them to make sure your voice was heard.

Your name was carried during the Compassionate Friends walk ... a woman I met on-line through CF carried it. I may try and go next year so I can carry it myself. For now, I will do the Manchester Walk though. Your plants are doing very well, by the way, outside your window. And we have plans to meet up with Christine and Hana. We all miss you and I think about you all the time. I did lose it on Saturday on the way home, I couldn't hold it in, just cried and cried thinking this is NOT the way it is supposed to be! Not the way at all. Sunday was a little better but still, you know, it's just unfair to me that you aren't with us. I was picturing us and what we'd be doing and what you'd be doing etc. Of course, with each of my "wind knocked out of me" moments, comes yet another epiphany and I did have one. I realized how much you and your life mean and how much you transcended the silliness, not meaning you weren't silly, that's how you lived your life, with silliness galore, but I mean the silly pettiness that seems to envelope and consume people throughout their lives. You washed all that away and it just wasn't there. Man, it's a fight without you, pal. But I was talking to someone and they were saying what a great life we gave you and I was thinking and then said "he gave it back" you did that. You gave back more than you ever took. The Bible talks about special mightiness you know and I do believe that is what you had. And just being around you seemed to rub off on us :) Or at least me.

So when my heart goes black, which is how it feels sometimes, I think about you and it just brings it back. My moments will continue I am sure, it's like waves that wash over me of sadness. But as I have learned, never turn your back on the ocean or the waves ~ I have to face them, head on. Watch for them, wait for them, respect them and see the absolute beauty and power and awe in the emotions and love that I feel. You made that possible Bryant. And every day I am privy to it, I am able to know that. You most certainly were and are one of my best friends. From that day I met you, when you were born, to now. Your smile never fades or dims and the memory seems to burn stronger, hence, of course, the meltdowns ... but if that brings me closer to you, then so be it.

I love you ~ you remember the special song and phrase I had for you every morning? Well I sing it, say it still, because it's true and always shall be. Between us always,

Mommy

Motorcycles ...

2010-07-05T21:58:00.000-04:00

So Bryant, my new thing is motorcycles. Not really new, you knew I loved to ride, you loved to ride, you loved thrills. Daddy loves his bike and you used to love riding on it when you were able, mostly with me running alongside making sure you were okay :) You thought that was awesome .... I miss you so much. I have had some pretty rough days thinking about you and when I ride with Daddy I let the iPod play and just think about all the stuff we did and how much you taught me. I was talking to someone the other day and they were saying how much you loved life and how we "gave you such a great life" and I said "Well he really gave US a great life" ~ nay I shall instead say "A great ride" - man you grabbed life by the handlebars and you were ready to go! So I am thinking, instead of riding on the back of Dad's bike, maybe I should ride BESIDE him ~ I know you would get a kick out of that. You are my inspiration, that's for sure, you never let anything be an obstacle for you. Thrills galore! What a ride we had! I told that person about you and how you made life so much more fun in so many ways, and how really, I lost my best friend. One of my best friends. That's how I see you Bryant.

So they ebb and tide, my feelings, my dreams,

memories and hopes. I love you Bryant. I miss you.

Love, xo xo,

Mommy

Toy Story 3

2010-06-24T11:09:00.000-04:00

Hi Bry,

On Sunday, we went to see the new release of Toy Story 3. It was hard to go. I remember the previews for it and thinking how happy you would be to see it and then seeing "2010" and thinking "wow that's far off!" and now here it is and you aren't here to be with us to see it. It brings me back in time to Toy Story 1, so long ago, 1995 I think. I remember we were at Carribean Beach at Disney World and everyone was there, Grammy & Grampy, Memere, Lynne & Don, Melinda and Jackie and of course, your best bud Emily. The TV had all Disney all the time since it was a Disney Resort and on the Channel it kept playing the previews for this new movie, "Toy Story" with the new type of animation (not cartoon) and we thought, well we didn't know what to think, except it looked wierd and sounded silly "toys coming to life".

I remember going to see it with you and dad and Emily. Julia and Liam were not born yet. And I remember being stunned by the movie, falling instantly in love with it and how you loved it so much, as did Emily. We rushed out and bought everything Toy Story, Woody & Buzz and all the stuff. I believe we still have the original Woody or at least one of the more original ones ... Emily used to write on all the toys as did Andy - you were the "owners" for sure. You especially loved Woody and would pull the string to hear him and he used to take some spins on the ceiling fan with your other favorite Bert.

The movie, Toy Story 3, opens with a scene of young Andy being watched on an old video tape playing with his favorites, Woody & Buzz to the tune of "You've got a friend in me". Thankfully for me, the movie is in 3D so I didn't have to make a spectacle as I sat there crying. At one point I did think I would have to leave but was able to keep it together. After the movie, Emily said she cried too at the same part :(

You are with us everywhere Bryant. Those memories ... so strong, so close by, you are just everywhere. That makes me smile. You experienced it, loved it, lived it, just took life and enjoyed it to the absolute fullest. So we miss you. What else is new?

xo xo Mom

Toy Story

2010-06-24T11:08:00.000-04:00

Bryant Tattoo

2010-06-13T19:50:00.001-04:00

Love & Miss you sooooooooooooooooooooooooo much Bryant. Hugs & Kisses from Mommy

Good times at the Beach

2010-06-13T19:24:00.001-04:00

Beach

2010-06-13T18:59:00.000-04:00

Bryant! We went on our first vacation since you left us in the physical sense. However, I will say, your presence was everywhere. We were at the beach and the wind was in full swing, something you could have enjoyed 24/7 while we were there. I have changed my profile pic on facebook to show us at the beach, you and I, because you loved the beach so much. Wind only made it that much better :) Emily was not happy with the wind blowing her hair all around and it made me think of how you'd find that amusing, you used to love to touch her hair and to tease her if you could, playfully.

All of us missed you so much. I could picture you in your beach chair, with us, enjoying the waves and water and fun and sun and all that goes along with our family vacations. Good times.

While we were there, a man who was in another unit came over and asked about the van. He is looking for one for his mother who is in a wheelchair. We gladly showed him the van and chatted about you, always something that makes me enormously happy, saying your name, sharing your story :) Your friend Nate watched the house for us, you would be happy with that ~ he took care of our silly naughty cats.

So, anyway, I missed you so much that I decided to get a temporary tattoo with your name so I could carry you around on my body while we were there. The guy who did the tattoo learned about you of course, because I had to share your story with him as he did the tattoo. He shared with me that he had a brother named Brian, who had also passed on. It is interesting how stories intertwine sometimes. I would like to get a permanent one with your name but your father is not especially fond of tattoos. It doesn't really matter though because you are engraved on our hearts and souls and minds. A life well lived and a life well loved, you definitely left a "tattoo" forever on all those who know and love you.

xo xo,
Mommy

Dreaming

2010-06-01T10:46:00.001-04:00

"Dreaming, I was only Dreaming, of another place and time where my family's from
Singing, I can hear them singing, While these waves had washed away all these scattered dreams...."

Lately, again, my dreams have turned to trying to save you, trying to get a second chance, trying to have my brain, deep inside, accept that you are gone. I realize you are not gone entirely, but physically, but even that my brain is refusing to process. The result is my dreams being rather unpleasant.

This I would like to change, because I would prefer to see you in my dreams in a happy way - hence the quote from Green Day's "Before the Lobotomy" which is how I feel most days. It continues ...

"Singing, I can hear them singing, while the rain had washed away all these scattered dreams".

It reminds me of the days of Bryant, the laughter, the singing the dreams ~ I wonder how it's all changed now. The thing that makes me the most angry and the most sad is that I know you would not have wanted this. You lived Bryant, for a purpose for a reason and with a gust and zest for life unmatched. You showed us how to live and dream, so why am I so confused and having such a hard time?

"Dying, Everyone's reminded, hearts are washed in misery, drenched in gasoline"

This I relate to also as I feel at any given moment, with little to no warning, my heart feels like it's burnt out completely. It is certainly missing a part that died with you.

There are times Bryant, when I am aware of what you've done and how much you accomplished and how blessed we were to have you. The days I recall of you and Emily at play, so happy, doing such little kid things ~ our glorious trips to Disney and all over the country as we traveled in our little red van ...

"Laughter, there is no more laughter, Songs of yesterday, now live in the underground"....

So I still miss you and perhaps it would be fair to say it gets worse each day. I will work on that but until my dreams can return to happier times, I don't foresee that happening. Yet I do pause and smile quit a bit at your memory, something you did, places we've been, etc. For example, yesterday, the newspaper had a section on "things to do over summer vacation in NH" and I looked at the places listed mentally checking off "Yep, Bryant did that, Bryant saw that ..." etc.

And tomorrow I fight on. Meeting with the attorney and then the SAC meeting, all for advocacy, to fight on for the kids "like Bryant" who deserve a fighting chance. You fought and won, now I have to pick up and carry on without you being physically here. I HATE IT!

Miss you so much,

xo xo

Mommy

Song for Bryant

2010-05-21T14:44:00.000-04:00

Hey Bryant,
I heard this song the other day, changed the lyrics slightly but it's definitely to you:
I thought I never would forget you
For I thought that I never could
But time has taken all the pains away
Until now, I'm down to hurting,
Once a day.

Once a day, all day long
And once a night
from dusk 'til dawn
The only time,
I wish you weren't gone
Is once a day,
Every day,
All day long.

I'm so glad that I'm not like,
another girl I knew one time
She lost the one she loved,
then slowly lost her mind,
She sat around and cried her life away,
Lucky me,
I'm only crying, once a day.

Once day, All day long
And once a night,
from dusk 'til dawn,
The only time,
I wish you weren't gone,
Is once a day,
Every day,
All day long

Love Mommy

May Day

2010-05-04T20:57:00.000-04:00

Hi Bryant,
Well it's the beginning of May. I have come to a new crossroads as far as my dreams are concerned. My sleeping has been much better as of late and that is good. I hate insomnia. Anyway, I was thinking about one of my latest dreams. Of course, you are in it and I am asking you to pull, you know, like when you were in bed or the wheelchair or whatever and we would pull back and forth, sometimes for therapy and sometimes for play. Well in the dream we were doing that and I could feel and touch you.

Then I had another dream, which I really wish was not a dream. In it, you came back and it was like "Bryant's back" and I was so freaking happy and overcome with joy! We were having a huge party and stuff. Those dreams I do not like waking up from :(

So it then occurred to me instead of fighting it, to try and dream about you. Maybe I'll know I'm dreaming, as in some dreams I know I am dreaming and I tell myself "You are only dreaming" and I reply "I know it but I am gonna enjoy it!" and we have fun :))) So I thought, you know, I am without Bryant all day, so that's like 12 hours or so, depending on how late I sleep ! So why not be with Bryant during the other 12 hours? It's a win/win :)

If you can't tell I miss you sooooooooooooooooooooooooooooooo much. It was gorgeous out the past weekend and you would have loved it. We are going to the beach and I am going to think about you and how much you would have loved it. Because I know you love the beach. I know a lot of things about what you liked and did not like and that's something I am ever grateful for, actually knowing you as a person.

I talk about you a lot, sometimes with people who have not known you. I can't help but brag about you because you are such an incredible light and spirit. Along those lines, I was watching the Stephen Hawking special the other night aout the Universe. He has a device like yours and not suprisingly, the voice sounds very much like the one on your device. So anyway, at one point he was describing the universe and how it looks when time has no power over it - the colors were amazing and the universe is beyond beautiful, far beyond the stuff on earth which is saying a lot. It reminded me of the Bible text that talks about the heavenly creatures (angels and spirit creatures) and Jehovah God's incredible, indescribable glory. It describes him as "the one seated upon the throne ... is in appearance like a jasmine stone and a precious red-colored stone and round about the throne there is a rainbow like an emerald in appearance". Anyway, the picture on the show was like that, showing the glory and brightness of the Universe. I can only imagine now what John saw in Revelation.

Although on the program they refuse to acknowledge any type of "intelligent design" the show ends with Stephen Hawking saying if we can unravel the mystery of the universe we will know "WHY" the universe is here to begin with. I found that rather fascinating because the Bible doesn't actually disagree with the whole Universe stuff they are discovering. In fact, if you read into it, it is amazing how much the writers knew. People probably thought John was on something ~~ and now we find out that his visions probably were glimpses of the Universe. The earlier scriptures have always described God as unable to be viewed by human eyes, which does make sense if the Celestial being is as beautiful as glorious as we can now envision.

Certainly, your being and your spirit were like that, beautiful beyond words or description and I find myself, many times, trying to find the words only to fumble. But last night, that shot of the Universe really made me see the wonders that we have waiting for us to behold. Stephen Hawking used the word "puny" to describe earth and humans and I do believe that word is quite a good one. Yet, with the glory of the heavens and the universe and from what we are told in the scriptures, we are still a part of the whole thing and although "puny" in comparison to the enormousness of the universe, we are still something to God.

The Universe is enormous ~ and they still refuse to see design. The scriptures inform us God has no beginning and no end. Now, looking at the Universe, something once so strange-sounding actually makes sense.

So that's my waxing poetic or philosophical for the evening. It made me think about things on another level and really made things actually seem clearer to me Bryant.

I love you and miss you ~ realizing you are everywhere :)

Love & Hugs,
Mommy